Sustaining life in crisis with Kelly Fritsch and Anne McGuire

What can disability justice teach us about building more livable futures in a world that is already broken? In this episode, Eleanor Drage speaks with Kelly Fritsch and Anne McGuire, authors of Broken Worlds, Disabled Kin: Strategies for Collective Survival, about disability, technology, accessibility, care, and collective survival.

The conversation explores how technologies—from ramps to genetic medicine and AI—are shaped by social, political, and economic systems. Fritsch and McGuire challenge the focus on technological innovation at the expense of maintenance, repair, and care, while examining how “brokenness” is experienced differently across communities. The episode asks what we choose to maintain and repair, who benefits, and what kind of future we are building.

Kelly Fritsch and Anne McGuire are scholars and authors whose work focuses on disability studies, accessibility, technology, care, and disability justice. Their research examines how disability can reshape our understanding of technology, interdependence, and collective survival.

Reading List:

• Broken Worlds, Disabled Kin: Strategies for Collective Survival by  Kelly Fritsch & Anne McGuire

• “Crip Technoscience Manifesto” by  Aimi Hamraie & Kelly Fritsch 

• “Crip Technoscience” by  Kelly Fritsch and Suze Berkhout

• War on Autism: On the Cultural Logic of Normative Violence by Anne McGuire 

• Disability Injustice: Confronting Criminalization in Canada edited by Kelly Fritsch and colleagues

Transcript:

Eleanor Drage (00:53)

I'm thrilled to be joined here today by Kelly Fritsch, who is the Canada Research Chair in Disability, Health and Social Justice, and Associate Professor in the Department of Sociology and Anthropology at Carleton University, and Anne McGuire, who is a full professor and director of the Program for Critical Studies in Equity and Solidarity at the University of Toronto.

And not only are they great fun and really lovely, but they've also just published a brilliant book called Broken Worlds, Disabled Kin: Strategies for Collective Survival that we will talk about today. But before we do, this is The Good Robot, and can you tell us, what do you do? What brings you to the topic of disability, justice, and technology?

Kelly Fritsch (01:35)

Hello, thanks so much for having us here today. We're really thrilled to be on the podcast. My name is Kelly Fritsch. I'm a disabled person and a Canada Research Chair in Disability, Health and Social Justice at Carleton University in Ottawa, Canada. And my research brings together critical disability studies, feminist science and technology studies, social movement studies, and political economy.

Anne McGuire (01:59)

And I am Anne McGuire. And as you mentioned, Eleanor, I'm a professor of critical disability studies at the University of Toronto. I come to this work as someone who, for a long time, imagined myself to be a non-disabled person. And I'm now living with and learning to navigate multiple chronic illnesses. Both Kelly and I have longstanding interests in how bodies and worlds are made together, how different systems and structures really determine whose lives are supported, who needs to be treated as kind of burdens, or who's kind of protected, whose bodies are imagined as needing correction or enhancement, and which forms of knowledge are valued and which are dismissed.

Kelly Fritsch (02:44)

Yeah, so in our collaborative work, Anne and I really bring transdisciplinary approaches to technology that refuse the idea that technology is ever neutral. And so for us, technologies are always embedded in social relations of power, whether those are gendered, racialized, colonial, capitalist, or ableist. And so this means that technologies can be tools of access and justice and connection.

But they can also really intensify surveillance, control, and oppression. And so our approach to technology also comes out of my work on Crip technoscience, which shifts attention away from technology as something experts simply design for disabled people and instead emphasizes disabled people as active makers, hackers, and reimaginers of technology and design.

Crip technoscience asks us to think about disability not as a problem that technology needs to solve, but really as a critical and creative site from which technologies, infrastructures, and worlds can be remade. So in our recent book, Broken Worlds, Disabled Kin, Anne and I try to extend this work by thinking about what we call making disabled kin within structures and systems that are broken by design.

And so we're interested in the ways that technology is, like, really steeped in power and the social relations that we build or fail to build around one another. So making disabled kin is one way of naming the shared infrastructures we depend on, and the kinds of social and economic abandonment communities are forced to navigate, and the collective power that we can build in the cracks of systems that are broken by design.

Anne McGuire (04:32)

And just to add, in the book, Kelly and I are really interested in what disabled people know about living in broken worlds, not as a story of resilience or overcoming, but as a set of practices for collective survival, for refusal, access-making, kinship, practices that are, by necessity, entangled with technology. So really looking forward to kind of diving deep into this today.

Eleanor Drage (04:54)

Okay, so if we want to be very specific, what is a good technology? What is an instance or a moment of a good technology? How did it become possible in that instance? And in what way should we be working towards good technology, therefore?

Kelly Fritsch (05:10)

Yeah, this is such an important question. And of course, my short answer is absolutely we can have good technology, but it gets really murky really quickly. So, you know, as a disabled person, I rely on technology every day to get out of bed, to use the bathroom, to eat, to be employed, to be a parent, and also to be active in my community and to travel. And so some of this technology is really simple.

Like the very simple wooden ramp that allows me to come and go from my house. Ramps are a relatively cheap technology; they're easy to maintain, you can modify them, you can repair them. And those are some of the reasons that I think ramps are an excellent technology. But some of the technology that I rely on is actually extraordinarily complex, including, for example, the genetic technology that's behind the first available medication for my disability.

So every four months, a synthetic strand of genetic material is injected into my spinal fluid, where it binds to a specific RNA sequence and helps my body produce more of a protein needed for motor neuron function and survival. And so this technology is not a cure, but it has profoundly changed the horizon of my life, and it has increased the likelihood that I will live longer and also retain more physical capacity than would have been possible before this technology existed.

And so to me, this makes this a very good technology. But of course, for this technology to reach my body, I depend on decades of scientific research, clinical trials, regulatory approval, pharmaceutical manufacturing, hospital infrastructure, public and private drug coverage, and also patient advocacy.

And so, you know, it requires trust in medical expertise and access to specialized care. And so, in this way, this technology is not just like this synthetic strand of this genetic material; it's also this entire network of people, institutions, knowledge, money, and care that allows this molecule to reach my spinal canal every four months. And so there's, like, a lot about this assemblage of social relations that is precarious.

Like the supply chains that produce and transport this drug, needing my partner to keep his job for his health insurance to cover the, like, $350,000 per year cost of this drug. And there are also long-term trade-offs of the medications, such as a risk of kidney disease and organ failure. So it's a good technology, but it's embedded in really complex social relations that matter just as much as the molecule itself.

But having said that, you know, even the relatively simple technology like the ramp is still embedded in very complex social relations that can give us, you know, a lot of pause. So one story that we tell in our book is about a time that I was in Chicago and I was trying to get around on public transit. And to use Chicago's L train as a wheelchair user, access depends on using a portable ramp.

Because there's a gap in the height difference between the train platform and the train doors. And so unfortunately, in Chicago, the ramp that's needed to get on the train is kept in a locked box on the station platform. So to use it, a transit worker needs to leave their ticket booth, unlock the box, carry out the ramp, position it when the train arrives, coordinate with the worker at the destination train station, and then put the ramp away again.

So this, like, seemingly very simple technology of the ramp is actually embedded in really fragile and tenuous, like, orchestration of people, labor, communication, and institutional capacity. So when no worker was present in the ticket booth, as happened many, many times when I was in Chicago, or when workers are overextended, exhausted, or even disabled, as I also witnessed, the accessible L train station became completely inaccessible.

So the Chicago L train, you know, has ramps, and it's a technology of access. But what it shows us is that access is actually relational, infrastructural, and political. So the good technology of the ramp and the good technology of the medication, even though one is simple and one seems more complex, they actually can't—either of them can't be separated from the broader material conditions that are required for their development, deployment, and then all the aftereffects.

Eleanor Drage (09:53)

And we'll have just had our episode with Cassandra Hartblay, who talks about ramps in Russia, where sometimes there is a ramp, but it's got snow on it, and it's been designed so poorly that even if you can make it to the top of the ramp, you can't open the door properly to get into the supermarket. And even if you then could, the supermarket aisles are so narrow you couldn't wheel through them.

So, yes, the complications of the ramp and the thinking about tech development in its lowest common denominator kind of form? What is the least we can do to tick some kind of accessibility box that doesn't at all map onto people's experiences or the technologies they're working with? Thanks for sharing that.

And the other thing that we were, a couple of years ago in the UK, Tani Gray Thompson, who's a very famous Paralympian, was stuck on one of our really shoddy trains, LNER, because she'd booked assistance to get off and the assistance never came. I'm assuming that it was a combination, therefore, of a ramp and a person that she needed to get off the train.

And in the end, she was forced to crawl off on her hands and knees. And it was a real display of infrastructural failure, cost-cutting now at National Rail that's resulted in these kinds of cuts to the people that matter most, and the fact that the trains weren't designed for people like her in the first place.

The book centers on the concept of brokenness and all the different examples of brokenness there are in the world right now. And my goodness, are there a myriad of different kinds? Of course, the world is unevenly broken, and people are, along with it. So can you explain why it matters to you to acknowledge the moment of brokenness that we exist in and really sit and feel these different kinds of brokenness that people experience, but also acknowledge that a lot of it can't be fixed?

Anne McGuire (11:48)

Yeah, so I think this is something a lot of people can really relate to. The impetus of the book really grew out of our experiences of the many ways the worlds we were inhabiting felt broken. These experiences were both, like, super personal, intimately felt, and also deeply enmeshed with global breakdown.

So, you know, on the one hand, we're encountering breakdowns in accessible infrastructure at our workplaces, inaccessible public transportation, as Kelly was speaking about; we're watching our kids' school buildings literally fall apart, experiencing personal health challenges within broader systems. So, on the one hand, very, very intimate and personal, and on the other hand, we were living, as we all are, amid wider social breakdown, pandemics, misinformation campaigns, climate collapse, ongoing wars and genocides, social fabrics that are really, really coming undone, really fraying.

And Broken Worlds, we start with the idea or from the idea that these many and very different ways of experiencing brokenness are not just accidental. Systems like healthcare, education, housing, borders, prisons, and care infrastructure are often targeting specific populations, producing disability, debilitation, and death, even as these outcomes are framed as kind of unforeseen or unintended.

So the book connects the minor everyday ways we experience breakdown with these broader systems and structures. And we do this to really show how these systems are broken by design and to expose who benefits from the brokenness and who is made to break. Who's rendered vulnerable, disposable, and ultimately expendable?

And I just wanted to add that when we're talking about systems that are broken by design, we're not really talking about anything new. You know, many marginalized communities, multiply marginalized communities, especially Black and Indigenous communities, have long argued this idea that the world is only now breaking has really obscured the fact that everyday life has long been unlivable for so many.

And so in the book, we draw on Cree scholar and writer Erica Violet Lee, who asks, "Do you know how many times Indigenous worlds have been doomed?" And we feel like this question is a really important one because it fundamentally reframes what it means to talk about brokenness. What feels like crisis or collapse for some is, for others, an ongoing intergenerational condition.

And yet, as our Toronto colleague and geographer Deb Cowan points out, there's also something really distinct about this cultural moment. There's a widespread sense that things cannot simply continue as they're going for much longer, and that this current social, political, and environmental moment- these conditions are reaching some kind of a breaking point.

And I also just wanted to say one more thing: that, you know, our book isn't focusing on the broken and brokenness and maintenance and repair. Our book is not only about brokenness. It's really focused on what disabled people and other communities know about living inside of broken worlds without mistaking these conditions as justice.

So, you know, we think about disability culture and activism, access-making practices, interdependence, kinship, about this question of how do we keep each other alive and cared for now while also refusing the terms of the world, you know, such as it is.

And technology is really central to these questions, right? Because it's one of the primary ways our worlds are organized. It shapes how we move, how we communicate, how we breathe safely, how we receive care, whose perspectives are honored and believed.

Technologies structure the conditions of disabled life in really profound ways, you know, from ventilator use, masks, captions, communication devices, algorithms, medical systems, surveillance infrastructure. And so we're really interested in how technology is not only this thing that can intervene or cure, but as part of everyday practices through which disabled people make access, sometimes in creative ways, sometimes in kind of ad hoc ways, how disabled people sustain care, how we refuse abandonment.

And, you know, at its best, I think technology doesn't promise individual independence. It's one of the ways interdependence is built or can be built, held, and made more livable. And so this book really tries to get at and bring together and hold together all of these things.

Eleanor Drage (16:41)

And the question of how we maintain each other, that is the key question. It's not, should we live forever, or are we going to live forever? Or how can we become perfect versions of ourselves to fulfill some transhumanist prophecy? It's how do we manage to live together, both as neighbors with each other, with people we may not have chosen, but also keep each other alive in ways that, you know, are not always pretty and perfect and high-tech and expensive. And anyone, I think, who is using AI or longevity to ask different kinds of questions is completely missing the point.

Anne McGuire (17:20)

And so it's this kind of double play on brokenness, but also on maintenance, you know, like, how are we maintaining each other? But what is it that we are maintaining? What worlds are being maintained through our practices of breakdown and through our repair practices?

Eleanor Drage (17:34)

Okay, so let's talk about repair, then, because you acknowledge that not everything in our lives and on the planet can be repaired, and you interrogate what repair actually is. I think it's a term I take for granted, certainly. We hear a lot from tech entrepreneurs, the bro-oligarchy I just talked about, that the world is beyond repair and we need to go to Mars, which you describe as a kind of YOLO attitude. And I really enjoyed the ambivalence also of the way you use YOLO in your work. And you focus on the importance of the individual's experience of life as opposed to the continuity of the planet after we're gone.

So, you know, that's Musk's outlook anyway, that it's about us, about the individual; it's not about what happens after us. So when is it appropriate to repair? And when is it better to say, hope and let's build alternatives? But in ways, and this is really important to you, that are not individualistic and that don't turn their back on the planet.

Kelly Fritsch (18:36)

Yeah. So there are so many ways that repair and maintenance contribute to building better worlds, and we cannot abandon repair and maintenance practices. So, you know, we can think about the ways that repair and maintenance can support sustainability: they can slow down forms of extraction, they can reduce waste, they can interrupt this desire for endless production.

And they also really push back on the assumption that technological innovation is the best or the only solution to structural problems. So rather than waiting for the next device or app or smart system to save us, repair and maintenance practices really ask us to attend to what exists now: the infrastructures, relationships, skills, and material worlds that are sustaining our collective lives together.

And so this really matters because repair and maintenance can make the infrastructures that we all rely on more resilient. So we think about this especially in the book in relation to thinking about maintaining aging power grids in the face of climate superstorms that more and more communities are facing.

So, other ways that repair and maintenance are important to continue to practice revolve around the ways that they can promote the development of skills in communities in order to provide for each other's needs. And another way we take it up is thinking through how we preserve our attachments to objects and sort of bearing witness to the histories that they represent.

But while we're trying to be attentive to all of that, one of the big interventions of the book is to show how repair and maintenance can sometimes lead us to fix systems that are actually designed to break us down. And so repair practices can actually maintain colonial, racist, ableist structures of normalized violence and oppression.

So at that point, that's when we turn to this question of, like, what are we maintaining? What are we repairing, for whom, and toward what kind of world?

And for us, the kind of world that we want to work towards is one that's really grounded in the recognition of our interdependence. And so this means paying attention not only to the person or object or system that's marked as broken, but also, like we've been talking about, to everything that surrounds it: the bodies, the relationships, the infrastructures, the environments, the technologies, the histories, the ecologies, you know, everything that makes life possible or impossible.

And so we really see that as a kind of form of care. And that helps us see the many ways that breakage and repair and maintenance aren't just technical practices, but they're political ones.

Eleanor Drage (21:27)

One of the examples that resonated with me the most was the broken electric door-opening button that you use, Kelly, at the designated paratransit entrance by the dumpsters at the back of the university building, which for much of 2022 and 2023 hung precariously, you describe, from a single wire.

And you say it's a really great description. I felt an affinity with a dangling button as disabled kin. The university was not attending to the maintenance and repair of the button, just as it was not preserving good relations with employees, or taking responsibility for spreading COVID and supporting genocide, or accounting for its own unjust expenditures, while implementing financial austerity within its academic departments and programs.

I wrote something that I found a bit contentious about Cambridge in my next book coming up. So I think it's great that you're brave enough to say something about the university. So well done, you. So yeah, the button communicates a great deal, right? About a lack of care for interdependence and these precarious university relations. It communicates more than just the technology itself.

And this is part of why I like technology: its ability to express these kinds of stories. Do you think that technology is unique in being able to tell stories like these?

Kelly Fritsch (22:47)

Yeah, I don't think technology is necessarily unique in its ability to tell these stories, but I do think that technology can make certain relations really visible. And when technology breaks down, or even when it continues to work in very surprising ways, like this button, it can really push us to reflect on and confront these broader relations.

And so in this story in the book, which, yeah, I don't know what my employer thinks about it, the door-opening button had detached from its wall-mounted box, and it was left hanging, clanking in the wind against the brick wall of the university building that I work in.

And yet, you know, very surprisingly to me, as I encountered this door day after day, despite its sort of, like, off-the-wall status, the single wire held its current, and it could still be used to open the door, albeit in a really unconventional way that definitely wasn't particularly accessible. But it was doable.

And so I really felt an affinity with it because it communicated something about my workplace, which at the time felt very much like a place where interdependent relations were also being left tenuously to hang by a wire.

And so, in naming this broken door opener as disabled kin in the book, this concept really helps us understand how its abandonment is entangled with the everyday systemic abandonment of disabled and other multiply marginalized people.

So, you know, it's really unlikely, for example, that the main entrance of a university building would, you know, remain precariously broken like this for weeks or even months. Yet for people like myself who rely on accessible entrances and infrastructures that are not always the main entrance and often are at the back of the building behind all the garbage cans, this kind of partial or precarious access is actually very routine, and it's something that I and others come to expect.

And so our concept of making disabled kin really hinges on the importance, then, of interdependent relations, like we've been talking about, between bodies, technologies, and environments, as well as the material stakes of those relations. And when these technologies, objects, or environments break down, so do we.

And so which technologies are carefully maintained and immediately repaired, and which are left to dangle in the wind, really reflects how technologies are differentially valued. But it also points to how there's a differential valuation of the people who rely on them.

So, I think people can really identify with technology stories because many of us know what it feels like when the thing that's supposed to make our life easier, whether it's the button or the elevator or the app or the transit system, like, whatever it is, ends up actually being broken, confusing, or unavailable.

You know, these kinds of ordinary breakdowns help reveal the ways that technology is embedded within broken-by-design systems and structures that we're all asked to navigate, although we navigate them in uneven ways.

Anne McGuire (25:55)

And just to add, you know, like, I've been thinking a lot about this in relation to my workplace as well. I had a meeting the other day where, literally, that's the ceiling; the student residence is above this office, and there's, like, a leaking bathroom pipe somewhere, like, or a shower- hoping it's a shower pipe. And there's a bucket, and we talk about the buckets in the book as well, but there's a bucket in the middle of the meeting and, like, yellow tape everywhere.

And we just had the meeting, and, like, to the drip of the water coming down. And in the past, I would have been frustrated with the fact that there's a hole in the ceiling and not in the fact that this is social abandonment.

And so I think really kind of building solidarity with these technologies or with infrastructure really helps to kind of clarify where the focus of our advocacy and activism needs to be.

Eleanor Drage (26:40)

Absolutely. And as you say, where you focus your attention really matters. So how you tell the story of infrastructural failure and breakdown is so important. But equally, innovation is also a way, not just breakage, of turning our attention, telling us a story.

Every time the iPhone is released, you know, there's a sign saying, "This changes everything again." And it tells us that life is different now, and we buy into that in many different ways, as ways of distracting ourselves from the real issues at hand. You know, we still don't see images of Apple e-waste on the internet. And the devices keep getting smaller. We assume that technology keeps disappearing into its kind of Moore's Law end product of something increasingly tiny.

Of course, the stockpiles of crap build up elsewhere in the first place. So how can mainstream tech innovation turn our attention away from what's important and from each other in ways that are sometimes anti-relational? A term that you use, and I think that's really very descriptive.

Anne McGuire (27:44)

Yeah, I mean, as you say, mainstream tech innovation really tends to displace the ongoing labor of maintenance, care, and repair, and it's privileging instead, you know, novelty, scalability, profit. And in this context, a fix is often imagined as something that's kind of new and commodifiable: a smarter system, a faster tool, the latest iPhone, but also, like, even poorly functioning technology that nevertheless, like, promises to sell. And these so-called, like, fixes are often at the expense of sustained investment in the infrastructures that sustain collective life.

And so, in this way, yeah, innovation frameworks can be deeply, deeply anti-relational, pulling attention and resources away from the fragile and already existing infrastructures that are keeping us alive and keeping us together.

And as we argue in the book, under neoliberal racial capitalism, innovation isn't just this response to crisis. It's, you know, and this is how it's often framed, as a response to the crisis, but it's often driving crisis, as you are mentioning, Eleanor. And then also, like, innovation can depend on the production and reproduction of crisis.

So, of course, there are these, like, really real and material economic incentives to sustaining conditions of breakdown, precisely because crisis is so easily recast as an opportunity, right? Like, crises open new markets, fuel technological development, legitimize new forms of extraction.

In the book, we discuss how climate-induced ecological devastation in the Arctic is being recast by leaders in both public and private sectors as a growth opportunity, right? This idea of, like, melting ice caps, reimagined as a new frontier for military dominance and new trade routes.

And there's also, of course, no shortage of industries that are built on crisis mitigation, you know, from construction companies that will climate-proof your home, to 24-7 AI therapy chatbots to address the student mental health crisis, to the proliferation of online tutoring companies that are really reliant on the breakdown of public education. And we don't talk about AI; you mentioned AI earlier.

We don't talk about AI in the book, but I think it's another really interesting example to think through here. So Gen AI is often framed as the solution to various forms of institutional breakdown, from bloated bureaucracies to chronic understaffing and intensified workloads, and it promises to kind of smooth over these problems through automation, efficiency, and scale.

But if breakdown is driving AI innovation, then AI isn't just responding to crisis; it's also participating and really, like, benefiting from its reproduction.

So thinking about this through kind of disability politics raises a bunch of, I think, interesting questions. Take the example of accessibility. I teach a course on accessible design. Gen AI tools can really support accessibility through automated captions and alt text. It can improve all kinds of ways of accessing various kinds of materials, but it also reproduces ableist assumptions; it can flatten complexity, and it, you know, often AI is just, like, inaccurate.

And so these kinds of captioning, alt text, for example, are not really that useful. But more significantly, I think AI access risks shifting how access itself is understood, moving it away from kind of a relational, collectively produced practice to something automated and delivered, and that's kind of profoundly detached from human-centered care and accountability practices.

And at the same time, you know, as we all know, AI relies on largely invisible material infrastructures, including extractive data and labor practices, neocolonial resource mining, all of which come with, you know, high costs to human and more-than-human ecologies.

And so while AI may appear to resolve the breakdown at the interface, it's often redistributing harm. Addressing accessibility, better or worse, here often means producing new forms of debilitation and disablement, both at the level of ecology and at the level of the human body elsewhere.

And so, of course, this raises this broader question that Kelly and I have been talking about recently, which is, like, can we make kin with AI? And making kin requires attention not only to what technology is doing, but to the conditions that sustain it, including its entanglement with inequity, extraction, and debilitation.

So, you know, this is a complicated question, but, like, any kind of relation, I guess, to AI has to be frictional. It has to be non-innocent, and it has to require an ethics of ongoing attention, alteration, care that really remains attuned to harm and really is committed toward collective risk mitigation for collective well-being and survival.

Eleanor Drage (32:50)

This was part one of my conversation with Kelly and Anne. In two weeks, I'll release part two. Check it out.