In this episode we chat to Laura Forlano, Associate Professor of Design at the Institute of Design at Illinois Institute of Technology. This is a special episode because Laura reads us some of her work on life as a Type 1 diabetic, or in her words, a disabled cyborg calibrated to an insulin pump. Laura’s writing gives us a different kind of insight into good technology, tech that in her case literally keeps her alive, but can also let you down in alarming ways.
Laura Forlano, a Fulbright award-winning and National Science Foundation-funded scholar, is a writer, social scientist, design researcher, and adjunct faculty member at the Institute of Design. Laura’s research is focused on aesthetics and politics at the intersection of design and emerging technologies. Over the past ten years, she has studied the materialities and futures of socio-technical systems, such as autonomous vehicles and smart cities; 3D printing, local manufacturing, and innovation ecosystems; automation, distributed labor practices, and the future of work; and computational fashion, smart textiles, and wearable medical technologies. Laura received a bachelor of arts degree in Asian Studies from Skidmore College and a master of international affairs degree from Columbia University. She also received a PhD in communications from Columbia University.
Forlano, L. (2019). “Stabilizing/Destabilizing the Driverless City: Speculative Futures and Autonomous Vehicles.” International Journal of Communication.
Forlano, Laura, & Smith, Stephanie. (2018). Critique as Collaboration in Design Anthropology. Journal of Business Anthropology, 7(2).
Forlano, L. (2017). “Data Rituals in Intimate Infrastructures: Crip Time and the Disabled Cyborg Body as an Epistemic Site of Feminist Science.” Catalyst. Special Issue on Science out of Feminist Theory
Forlano, L. (2017). “Posthumanism and Design.” She Ji: The Journal of Design, Economics, and Innovation. Special Issue on Transforming Design Matters
KERRY MCINERNEY: Hi! I’m Dr Kerry McInerney. Dr Eleanor Drage and I are the hosts of The Good Robot podcast. Join us as we ask the experts: what is good technology? Is it even possible? And how can feminism help us work towards it? If you want to learn more about today's topic, head over to our website, www.thegoodrobot.co.uk, where we've got a full transcript of the episode and a specially curated reading list by every guest. We love hearing from listeners, so feel free to tweet or email us, and we’d also so appreciate you leaving us a review on the podcast app. But until then, sit back, relax, and enjoy the episode!
In this episode we chat to Laura Forlano, Associate Professor of Design at the Institute of Design at Illinois Institute of Technology. This is a special episode because Laura reads us some of her work on life as a Type 1 diabetic, or in her words, a disabled cyborg calibrated to an insulin pump. Laura’s writing gives us a different kind of insight into good technology, tech that in her case literally keeps her alive, but can also let you down in alarming ways. I hope you enjoy the show.
Fantastic, thank you so much for joining us here today. It's wonderful to get to chat. So just to kick us off, could you tell us a bit about who you are? What do you do? And what brings you to thinking about feminism, disability and technology?
Hi, I'm Laura Forlano. I'm an Associate Professor of Design at the Institute of Design at Illinois Institute of Technology. And I'm a social scientist and design researcher. And I am brought to feminism and technology specifically because I've found that in talking about my own disability, I'm a type one diabetic, feminism and disability studies offer me ways of writing about my own experience using autoethnographic field notes, to think about the politics of technology.
Wonderful. Well, today we have a special treat for listeners before we ask our big robot questions, nor are you going to read a vignette from one of your works that you've written based on your personal experience of living this extraordinarily intimate life with a very particular set of technologies.
Great, yes. So I'm gonna read a reflection. I'm thinking about this as creative nonfiction writing, it's part of autoethnographic field notes, on my own experience with disability as a type one diabetic. And I'm gonna read you a vignette, which I call Plans and Situated Algorithmic Actions. And this is Part One from 2018.
So, in 2013, before I adopted an insulin pump and sensor system, I often woke in the night drenched in sweat, and nearly two weeks to get out of bed to get a 15 ounce glass of orange juice from the refrigerator in the kitchen a few steps away, or even to reach for chalky glucose tablets sitting on the nightstand. I often went to sleep hoping I'd wake up in the morning and not fall into a diabetic coma. While teaching my classes, my face would go numb while walking down the street, I would suddenly not be able to feel my legs. While that fear of frequent severe lows is a thing of the past, in my case, from 2018 to 2022, due to the need to calibrate the sensor system, in order to ensure the continued operation and accuracy of the insulin pump, I was not able to sleep through the night more than a few times a week. It's almost ironic that the system that has nearly eliminated the frequent episodes of extreme low blood sugar that woke me in the middle of the night almost a decade ago, has enforced another form of sleep interruption and deprivation. But this one feeds data to the algorithm rather than sugar to the body. With this smart system, frequent sleep interruption was such a common occurrence that I was convinced that I was sleeping like a sensor in shorter patterns that mimic the system. And in short, if you cannot sleep, you cannot dream. With long term sleep deprivation, leading to anxiety, irritability, and depression. I believe that the AI system that's keeping me alive is also ruining my life.
Thank you, that was wonderful. In light of that reading, I'm going to ask you our big robot questions slightly differently. So we usually say, you know, what is good technology, is it even possible, and how can a feminism help us get there? And those questions often lead us or our guests to think very abstractly. But the experience that you read to us is extremely concrete. And it's based on a particular kind of technology. So what for you is good everyday technology? How does it feel when it works well? And how can thinking about technology through disability help us shed new light on what good technology actually might be?
That's such a great question. I mean, for me, good technology is really generous and compatible with human life. It's an interaction that is kind and I often talk about this notion of intimate infrastructures. So this intimate relation you have when living with technology, especially an existential technology that is keeping you alive. So I really think of it in those terms. And so many of our interactions with technology are quite the opposite. They're dehumanising, they're abusive, they're persuasive in the fact that they're nudging you constantly to make certain decisions or do certain things. And so for me, I really think about what what would the relation So look like with technology, if it was a healthy relationship, in the same way that we might think about relationships with friends or family, what feels like a healthy relationship, and what feels unhealthy or incompatible with, with, you know, your values and your ethics and your politics, for example. And so the second part of the question, I think, is about how thinking about technology through a disability lens might allow us to imagine alternatives. And so for me, I asked this question, can AI - Artificial Intelligence - be disabled, and using that language of disability, for me, invites a number of different readings or meanings. So in the disability community, or writing as a disabled person, we often use the term crip to refer to disability and this is a positive association with our identity, it is not a lack of something, but it's an expansion of what it means to be human. And so thinking about AI, from a Crip, or disability perspective might suggest that we think about the failure and the ways in which technologies may not work in the ways that are often promised. But that this, you know, this failure or this malfunction might be seen as a positive or a generative moment. And in fact, in recent months, I'm noticing more and more research on computational technologies and algorithmic systems, engaging in a generative way with failure. Again, not as a lack but as a point of inventing new methodologies for engaging with computational systems. So those are some of the things that I think can be done by using this lens of disability to think about computation technology.
That's really fantastic. Thank you so much, it actually reminds me of something that Eleanor works on, as well as a number of other feminist theorists as sort of queer theorists trying to think about what possibilities are opened up by by failure, because so much of the use of these contemporary computational systems is about foreclosure. It's about closing down particular futures and closing down particular avenues for things to unfold. And I think that's what so much of the kind of work we do is about, it's about pushing back against that. I was wondering if you wouldn't mind reading us another vignette. And if we could use that vignette, and also the first one, you shared, to think about how we are being compelled to calibrate ourselves to the technologies that we supposedly use.
Well, definitely, with the calibration of sensor systems, as I mentioned, I had, you know, frequency of sleep interruption due to the need to calibrate the system. And then even on the nights that I wasn't woken up in the middle of the night, on multiple occasions to calibrate, I actually still had very disrupted sleep patterns. And so that was, you know, in a way so much that we learned from studying technology is the ways that we are formatting humans to fit computational systems. And I think we can look at a wide range of technologies and, and try to understand, for example, the ways that we change our voice patterns when we try to talk to Siri, or Alexa, it might be an example of the ways in which we are formatting and sort of calibrating our own human systems to fit better with with technology.
Okay, so the second vignette I want to read is called ‘Part 2021: A disabled cyborg is nothing without the right parts’.
One morning in early December, on the final day of the semester, I got a low battery alert. It was 11:45am and I needed to eat lunch before heading to campus to teach that afternoon at 2pm. I unscrewed the battery cap with a coin, a quarter to be exact, I popped the new battery in and screwed the battery cap back on, but the pump did not recognise the battery and the screen did not illuminate. I glanced at the small table in the corner of the room where I had placed the pump and saw a small copper coloured piece of metal, the shape of a plus sign with little grooves and bumps. The piece had fallen off the cap. My heart was pounding, I was very stressed and afraid in an existential way. I called the company to tech support, but as soon as they could deliver a new battery cap was the following day. I considered possible fixes for the broken cap. I went to buy some superglue at the nearest CVS Pharmacy located within a Target store. I sat on a bench in the pharmacy carefully dropping a dab of glue onto the battery cap and trying to fix the metal piece. Once it dried, I screwed it back in. Still, this made no difference. My phone rang. It was the local diabetes educator. He'd remembered my name from the original training three years before he had a few extra battery caps and could drop one off that afternoon. At 2:45pm he met me at the pharmacy. I bought a package of new batteries and inserted them into the pump along with the new battery ca. Ta da ! The screen illuminated. I reconnected my pump to my body. In seven years. This was the longest that I had been disconnected from my pump. My heart started beating more slowly, I zipped up my coat and headed over to a restaurant for lunch. As I was walking westward away from the pharmacy, I felt a familiar buzzing under my coat. The sensation that had been such a nuisance for so many years reminded me that once again, I was still alive. I was reunited with my disabled cyborg identity, I unzipped my coat from the bottom and took out my phone ‘calibrate now’, the alert said, ‘calibrate now’.
So wonderful. I love that you have managed to make this incredibly truthful. But also this idea of calibration to technology is something that a lot of people can resonate with, right, it kind of happens without us knowing it , we reorient ourselves and kind of reject ourselves so that we better align with the stuff that we use, and in your case keeps you alive. And this is an extraordinary piece of writing. But you also work with artists and design initiatives to make visible certain aspects of the subjective experience of living with technology. So how do you do that to find new ways of connecting with audiences?
Absolutely, I think one of the first pieces that I worked on specific to this topic, and this project was actually a bathing suit, designed with Sky Cubacub of Rebirth Garments, a queer crip fashion designer, and I was prompted to reach out to Sky specifically, because I had a lot of anxiety about what it meant to be seen, for example, on the beach in the summer with this piece of technology attached to my body. And so the bathing suit has some special custom pouches that attach to the bathing suit and accommodate the insulin pump. And so primarily it was a prototype for thinking about the visibility of the technology on the body and the invisibility of the condition of diabetes itself. And so one of the interesting things I think about diabetes is that it's invisible, most of the time, I so to speak, pass for someone without a disability. But over the last, especially over the last seven years, I've really come to realise that as a disability it is a really unique experience of the world. And again, like taking a crip perspective, it's really an expansion of what it means to be human and so I try to share that through creative nonfiction writing. But then the art and design prototypes offer ways of thinking about you know what this, you know the meanings and sort of how these things are socialised. And offers a kind of Research creation or practice-based design way of engaging with the topic as well. So that often can open up new questions about the research topic, but also engaging with materials and, and you know, colours and patterns and aesthetics and feelings and emotions, right. So it really allows you to externalise some of that off of the page, but into a physical object that also audiences could come and see as well.
That's really wonderful. And I really love your work for so many different reasons. It's also really special to hear you read your vignettes, because I've read them on paper before, but to kind of hear you sort of say them, you know, it gives them a different kind of resonance as well. And so yeah, thank you so much for being willing to share these stories on the podcast. I think it's also particularly important because something that you've flagged quite a lot is how uncomfortable a lot of people still are about talking about disability in public. And that's something I think we see a lot in higher education, Eleanor and I are both based at the University of Cambridge, and you're also an academic and scholar, as well as an artist and amazing practitioner. And these spaces, I think, are places where often a lot of disabilities, both visible and invisible, are still really difficult to talk about. And so I was wondering if we could hear your third vignette, and also maybe have a bit more of a conversation about how art might be able to combat or engage productively with the kinds of discomfort people feel about talking about disability.
Sure, I’d love that. So ‘Part 3, 2022: The machine that brought me to my knees’.
It was 3:30am on a Saturday morning in late August, after a long and intense week of travel. I was in the bathroom grasping the porcelain of the toilet bowl, hanging on as if my life depended on it. And in fact, it did. I had awoken with dangerously high blood sugar. I thought it was strange. I hadn't eaten much the day before because I was worried that I'd run out of insulin before getting back home to New York. About 30 minutes before I got home on a delayed train. My pump started its characteristic buzzing and beeping, it's only means of communication with me, it's human being. As soon as I arrived sweaty and tired, I changed the cartridge of insulin in the pump and tubing that was attached to my stomach, facing a refrigerator that was nearly empty after four weeks of travel. I went straight to bed without dinner, too tired to make any additional effort. At 4am I drank some water, ate some crackers and went back to bed. Administering insulin with the pump every 30 minutes and monitoring its effect on my big blood sugar. I felt nauseous again and ran to the bathroom at 5am. I hypothesised that I wasn't getting any insulin at all. And so I changed the tubing. At 7:30am There was still no change and my husband went for a haircut. At 8:15am I texted him that the numbers were finally coming down. I fell asleep at 9am. Later that day, I removed the original site. Sure enough, the small tube that delivers the insulin had been and slid right under the adhesive tape and never entered my skin. The humidity in the apartment had prevented the adhesive from sticking properly. I've been without insulin for nearly 12 hours for the first time in 10 years. It took me nearly a week to recover.
I think one of the reasons I like both the creative nonfiction style of writing as well as the autoethnographic field notes is that it actually has allowed me to transform myself and my academic work. My way of presenting can become much more performative and almost theatrical as compared to maybe you know, another project that I might do on a topic that's more distant from my own experience. And so that aspect has been really enjoyable. And then, I think, to try to tie in, perhaps, you know, how do these vignettes introduce disability and hopefully make it less of a stigmatised topic within academic circles: of course, there are, you know, critical disability studies and other communities where disability is the topic, but I still find it that in many academic professional settings, and even personal conversations that, you know, generally, we don't really want to hear too much about each other's you know, problems or, you know, diseases, conditions, disabilities, these are these have kind of been set off to the side. And I do think that one of the things that feminism does is to make it part of the conversation about the politics of technology. Because if we aren't willing to look carefully at our own experiences with technology, then, you know, and all the diversity of our identities, whether that be race, gender, sexuality, disability, that, you know, we really are dealing with a very impoverished understanding of the world. And so I think, one of the things that we can do by sharing these kinds of narratives and doing it from a research perspective, so like, I make very clear in this work, that these are not meant to be confessional. And they're not even necessarily meant to be personal, but they're meant to be research about the relationship of humans living with technological systems. And so from that perspective, I really hope to give, you know, other researchers also, perhaps examples that they can take to really allow us to develop a fuller understanding of what it means to be human, and the expanded experience that we have with technology.
Absolutely. And I think it's been such a privilege to be able to chat with you about this today. And we were actually just chatting this morning with an incredible artist whose episode will be coming up on the Good Robot Podcast. So for our listeners, get excited for that as well. And she was talking about her embodied art practice, and why that was so important to how she thought about and engage with technology. And so it's really special as well, I think, to get to talk to you and hear about how both your personal experiences but also the way that you narrative eyes and think about those experiences, is providing us again, not with a full closure, but with an opening to thinking about what our relationships with technology have been like. So thank you so much for taking the time to share your work and your stories with us on the Good Robot Podcast. We are so appreciative of it.
Thank you both. Thanks, Eleanor, and thanks, Kerry.
This episode was made possible thanks to our previous funder, Christina Gaw, and our current funder Mercator Stiftung, a private and independent foundation promoting science, education and international understanding. It was written and produced by Dr Eleanor Drage and Dr Kerry Mackereth, and edited by Laura Samulionyte.