Health.code
Explaining intersections of disability, health, and technology with social theory.
Health.code
What does it really mean to be a cyborg?
Cyborgs are people who use technology to enhance human ability. There are many people with disabilities who are, technically speaking, cyborgs. This episode explores what it means to be someone with a disability who also identifies as a cyborg in relation to capitalism and data surveillance.
To help me illustrate some of these themes, I interviewed Sarah Friend, an artist and software developer who lives with type 1 diabetes. Sarah uses open source software designed by members of the diabetes community to monitor her blood sugar and deliver insulin, and she generously breaks down the reality of needing to be a cyborg as someone who depends on technology for her wellness and survival.
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Cuboniks, Laboria. “The Xenofeminist Manifesto.” A Politics for Alienation, Verso, 2018.
Haraway, Donna. Chapter 4: A Cyborg Manifesto: Science, Technology, and Socialist-Feminism in the Late 20th Century.
Hamraie, Aimi, and Kelly Fritsch. “Crip Technoscience Manifesto.” Catalyst: Feminism, Theory, Technoscience, vol. 5, no. 1, Apr. 2019, pp. 1–33. DOI.org (Crossref), https://doi.org/10.28968/cftt.v5i1.29607.
Hester, Helen. “What Is Xenofeminism?” Xenofeminism, Polity Press, 2018.
Kafer, Alison. “Introduction.” Feminist, Queer, Crip, Indiana University Press, 2013, pp. 1–24, http://www.jstor.org/stable/j.ctt16gz79x.5. JSTOR.
---. “The Cyborg and the Crip.” Feminist, Queer, Crip, Indiana University Press, 2013, pp. 103–28, http://www.jstor.org/stable/j.ctt16gz79x.10. JSTOR.
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Powell, Christopher. “Radical Complexity: Using Concepts From Complex Systems Theory to Think About Socialist Transformation.” Journal of Marxism and Interdisciplinary Inquiry, vol. 12, no. 2, 2023.
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In the world of this open source tech that I'm using, I am embedded. I have more privacy, but I am more embedded in community.
Tiff:Hi, I'm Tiff Regaudie. Welcome to a podcast that, as of yet, has no official name, but today will be about disability, cyborgism, and data surveillance. As you might know, I'm a master's student in the Communication and Culture program at Toronto Metropolitan University, and a great thing about that program is that they give you the opportunity to design your own course. Because my thesis is eventually going to grapple with questions about disability and technology, specifically large language models, I designed a course that could set me up to ask thoughtful questions in that space. I'll drop my syllabus for the course in the show notes if you're interested, but to give you an overview, I chose authors that focus on several branches of study, disability studies, cybernetics, and from that, what would eventually become science and technology studies. That meant readings about the fascinating history of cybernetics, which began in World War II with mathematician Norbert Wiener, who pioneered the use of feedback loops for designing systems that could dynamically adjust their own behavior to achieve desired goals. In this case, anti-aircraft equipment that could keep up with World War II pilots and their evasive maneuvers. Cybernetics is an example of transdisciplinarity, which is when several disciplines enter into conversation with each other to create a new field. For example, cybernetics combined mathematics, biology, psychology, information theory, philosophy, and later computer science to create a new field that would eventually conceptualize artificial intelligence in the 1950s. If you want to read more about some of the biggest names in cybernetics, you can look up Margaret Mead, Warren McCullough, John von Neumann, Claude Shannon, and Stafford Beer, who designed the 1970s Chilean project Cybersyn for Salvador Allende before the American CIA-backed coup by Pinochet. One of the most well-known theories to emerge from cybernetics is Donna Haraway's 1985 cyborg manifesto, which imagined a genderless transhumanist being emerging from what she identified as three crucial boundary breakdowns, the first being the breakdown between what it means to be human versus animal, as in we understand how we're not so different now, the second being the integration of the organic with the machine, and the third being the breakdown between physical and non-physical or virtual worlds. I could do an entire episode on Haraway's cyborg alone, and I'm sure it's been done already if you want to know more, but despite valid criticisms from disability and Black feminist scholars, the durability of her theory is forged in the unequivocal embrace of the slipperyness of identity as an opening for feminist socialist coalition building. Just as there are a million ways to be a cyborg, there are a million ways to be a woman, and it does the feminist movement a severe injustice to hold on to rigid definitions of womanhood. In our current political climate, no one feels this injustice more than trans non-binary people. But oddly enough, Haraway barely mentions people with disabilities, safe to say, and I quote, "They can and sometimes do have the most intense experiences of complex hybridization with other communication devices." So just as valuable to me, if not more so, was Alison Kafer's critique of Haraway's cyborg 20 years later through the lens of disability, in probably her most well-known text, "Feminist Queer Crip." Kafer gives a generous reading of Haraway, but also ultimately concludes that, especially when the cyborg today has no choice but to interface with the wealth disparity so inherent to capitalism, it risks reinforcing able disabled binaries and exacerbating class differences between people with disabilities. Because of course, who gets to be a cyborg is a matter of financial access, and for people with disabilities, it's crucial that access to technology, rather than be strictly commodified, is instead relationally politicized, meaning we think of technology as a political apparatus that has everything to do with class and identity. Cripping the cyborg, Kafer says, means recognizing that our bodies are not separate from our political practices. Other readings also carry this message loud and clear. Standouts include Helen Hester, who contributed to the Xenofeminist Manifesto, which as an extension of Haraway's cyborg reminds us that technology has been and can continue to be emancipatory for marginalized people. But only if our social relations move away from capitalist labour exploitation and corporate surveillance. I owe a lot of my current understanding of how labour exploitation disproportionately affects people with disabilities to Marta Russell, a Marxist disability rights activist who was known for her sharp political economy analysis of disability in the early 2000s. A book I read for the class Health Communism by Beatrice Adler Bolton and Artie Vierkant, you can also check out their fantastic podcast Death Panel if you're interested. Their book draws heavily from Russell's work to demonstrate how people with disabilities are not only surplus populations, which in Marxist terms means people who don't work and are part of the reserve army of labour. They show how people with disabilities are also considered sites of extraction for capital wealth accumulation and instrumentalized in this way for profits specifically because they can't work. I'll dig into some of the details of these readings throughout the podcast, but first I want to dive a little deeper into some core concepts and how they relate to each other. Also coming up is an interview with Sarah Friend, an artist and software engineer from Toronto, who's now based in Berlin, about her experience being a cyborg with type 1 diabetes. So skip ahead if you're more interested in that dialogue, although I do think it's important to get on the same page about a few things before we get there. So if you take away one thing from this podcast and nothing else, it's that disability is political relational. Thinking of disability is political relational means de-centering disability as an individual experience and relocating it to quote Kafer again, "in built environments and social patterns." This means a few things, so let me break it down. First, disability exists in relation to the concrete and abstract infrastructure of the personal and social spaces that are necessary for someone's participation in society. Early disability rights activists delineated between impairment, which is the embodied experience of disability and, well, disability, which is the product of social and architectural barriers. This is considered the social model of disability. Now, even though the social model is responsible for many wins in the disability justice space, the siloing of the embodied experience of disability as completely separate from social relations inadvertently created internal hierarchies within the community. For example, people who are hard of hearing and want the assistance of cochlear implants versus those who do not. So Kafer further complicates this delineation with her political relational reframing of disability. This is because she doesn't want to further marginalize people who want medical intervention to ameliorate the sometimes painful embodiment of disability. Kafer recognized that you simply can't apply the social model to every aspect of disability because social structures aren't totally adequate for addressing physical pain, for example. In the political relational model, there is room for an embodied interpretation of disability. At the same time, fixed definitions of disability can't be divorced from the economic effects of their fixing. Disability should be political, no matter how much the commodification of ability enhancement or self-care wants to depoliticize it. Governments label people with disabilities so they can determine who is "deserving" of benefits so they can keep the tax burden on the upper and middle classes as low as possible. As a way to resist this kind of assimilationist reductive biocertification that has more to do with austerity than care, Allison Kafer says people should be allowed to claim "crypt" for themselves as a way to acknowledge that we all have bodies and minds with shifting abilities and we all deserve care as those abilities shift. So it's really that word, shifting, that describes Kafer's political relational model of disability. The experience of disability shifts depending on class status, cultural beliefs, political power, access to health care, employment status, gender identity, etc. Just as there are a million and one ways to experience gender, there are a million and one ways to be disabled, but all of those ways stand in relation to other factors, which leads me to my next point of clarification. Just as definitions of disability are fluid, technology as a thing that exists can never claim to be fixed and neutral. It's also relational, particularly as a commodity, which informs the way it interacts with people with disabilities. And when we think about this relationality, we need to consider who owns the technology, the labour that's exploited to make that technology profitable, and the goals that technology aims to fulfill and the byproducts of those goals. A socialist technology or a technology that's been cripped is fundamentally different from a capitalist technology at all levels, including the technical, right down to the hardware and the data and the code. To give you a concrete example of what I mean here, we can compare the crip technoscience framework to the current iteration of the transhumanist movement. They're both ways of framing technology as potentially liberatory, but the differences between them are meaningful for people with disabilities. There is an entire history of the transhumanist movement that I can't get into in this episode, but on a basic level, transhumanism is rooted in the enhancement of the human condition through technology, specifically for the purpose of longevity and cognition. Transhumanists envision post-human beings who have escaped what they view as the primitive embodiment of a flesh prison. Here's an official definition from an organization called Humanity+, which used to be called the World Transhumanist Association. Quote, transhumanism is the intellectual and cultural movement that affirms the possibility and desirability of fundamentally improving the human condition through applied reason, especially by developing and making widely available technologies to eliminate aging and to greatly enhance human intellectual, physical, and psychological capacities. End quote. But given this definition, you have to wonder, whose reason is being applied to the development of transhumanist technologies? Whose vision of intellectual enhancement is being realized through transhumanism? And for that matter, what does the ideal post-human look like, sound like, move like? If you're starting to think this sounds like 21st century eugenics, you'd be right. The transhumanist movement, as we know it now, grew out of California, in tandem with the Silicon Valley tech economy. So shouldn't surprise you that transhumanism is a line with techno-libertarianism, which seeks to minimize government regulation in the development of technology. Today's transhumanist want to be free to commodify technologies that would not only enhance human ability, but ultimately profit from the elimination of disability. Transhumanism and its current alignment with neoconservative capitalism is truly like the final boss of wealth extraction from people with disabilities, in that it wants to dispense with the surplus population altogether. Never mind that capitalism can't work without a surplus population to exploit, but I digress. Crip technoscience, on the other hand, centres disabled people as makers and owners of technology. Developed by Amy Hamraie and Kelly Fritsch, the crip technoscience framework weaves together, the co-production of technology and the politics of anti-assimilationist disability activism. Whereas transhumanism is about maximizing individual enhancements or technology, crip technoscience views technology as an interdependent act of creation and distributed ownership among people with disabilities. It's not willing to accept that the production of technology necessitates living with labour exploitation and corporate extraction. People with disabilities also have a long history of tinkering with their environments to make life more accessible for themselves. Crip technoscience extends some of this lineage and invites people with disabilities to develop their own technologies as a political act of collective anti-assimilationist resistance. But, despite my seemingly clean comparison between a eugenics transhumanism and a utopian crip technoscience, the relational reality of these interactions between people with disabilities and technology is much more complex. This is what I'll leave you with as I move on to my interview as Sarah Friend, an artist and software engineer from Toronto who's now based in Berlin. She talked to me about being a cyborg as someone with type 1 diabetes who wears an insulin monitor and pump and uses open source software to monitor both.
Sarah:I have type 1 and type 1 is the kind that you would normally be diagnosed with as a child. But, fun fact, you can, in fact, get it at any age, which I discovered in my early 30s when I was diagnosed with it. So, there are a bunch of different treatment modalities. When I was first diagnosed, I did what's called multiple daily injections. So, that means at minimum about five, but often as many as 10 times a day, I would give myself an insulin shot. And now I use an insulin pump, which is a device that you wear 24/7. And it sort of automatically dispenses insulin all the time and also as you program it to do so when you might be eating or what not.
Tiff:What was that transition like for you going from injections, which, you know, having to do that several times a day that seems really disruptive versus a pump where you just have to wear it?
Sarah:I switched to a insulin pump just this year, so the changes in my life are fresh. And when you're, like me and diabetic, I think maybe some people actually, I know this is sort of the theme of the podcast, choose to keep their diabetes very private and would maybe only take an injection in private. I was not like this. I would take one on the subway. I would take one, like, I would just stop on the side of the road and take one. Like, if it's a time-sensitive dose, if you need it, like, actually 15 minutes does matter to wait is not ideal. So I thought, you know, like psychologically my comfort level with taking injections pretty much anywhere at any point was complete. However, now with the insulin pump, which is, you know, I am wearing it pretty much all the time and it is a visible device, but it's often under my clothing. I use an app on my phone to take insulin and I have felt relief not having to, you know, do something visible in order to take the medication, especially, you know, injectable medication. There is stigma around it. I think a lot of people's first association, honestly, it's drugs. It turns out what I thought was my complete and total comfort with taking injections anywhere. It's kind of nice not to have to do it, actually.
Tiff:Of course, that makes sense. Yeah, yeah. I can understand the relief at, you know, not having to do this like act of rebellion in public several times a day.
Sarah:It turns out I was like hardening myself to do it in a way that I didn't realize I had hardened myself until it was gone.
Tiff:I'm wondering if you can actually describe the technology that you you are wearing and that is, you know, a part of your body.
Sarah:There are two devices that I wear and one of them is a continuous glucose monitor. Usually called a CGM for short and those are actually a lot more common. So it's fairly likely that you, I think, well, even I talked about this previously, but it's also fairly likely that people might have seen these around. There are some which are very, very small, just like a little white circle that people usually wear on their arm. I also wear mine on my arm almost all the time. It's a little bit bigger because I have a kind of older model that I prefer, but it's, you know, it's, it's about the size of my thumb and yes, so that's one of them. And it's sensing my blood sugar all the time. It's being read by Bluetooth with an app on my phone. And then the pump itself, I use a pod pump which is, there are two main kinds pods which are, well, I don't know how to describe it honestly except a pod, but you put insulin directly in this little device which is, I guess a little smaller than my palm and it's a little bit lumpy, but it's not that thick. It's maybe about a centimeter thick and you stick it to yourself somewhere on your body. And it has the insulin directly inside it as well as a little needle going under your skin.
Tiff:I'm wondering about two things. The first is, I guess, what the installation, because you said that this runs underneath your skin. So what was the installation process for like literally the connector inside your body? And then also I'm wondering how often do you have to actually like interact with the technology and like remove the pod and change things like literally like physically interact with the technology?
Sarah:So this is kind of interesting because one of the main things that people tend to think when I tell them I have an insulin pump is that it's, you know, there are devices that interact with the body in some way where it's implanted permanently, but the insulin pump is not like that. So I move it every three days and you actually have to, I mean there's two reasons one, anything that's going through the skin kind of permanently and you know it's a bit of an infection risk. So if there's no sort of medical reason that it might need to be in the same spot or that it might need to not be moved regularly, then it's probably better to move it just for the injection risk, infection risk, sorry, but also insulin is not meant by the body to be distributed subcutaneously under the skin. It's meant to be distributed by the pancreas directly into your bloodstream. So it's actually, it can be bad for the tissue that it's entering into. If it's always going into the same spot, you know, the fat cells under the skin can kind of react to it. There are different kinds of reactions that people can get, but all of them might be visible, might cause also that location to no longer absorb insulin as well. So yeah, a couple of reasons is better to move it. So I actually reapply it all the time myself. It's a very funny process. You like put the insulin in the palm, and you like stick it to yourself and then you push a button in this app, I'm simplifying, but anyway you push a button in this app and it like ticks a couple times, like click, click, click, click, click, and then it stabs you.
Tiff:That's so interesting because as you're speaking, do you remember how I told you about Allison Kafer's critique of the cyborg? And one of her, one of her critiques is that where, like where organic human meets machine, those sites of conjoinment, she talks about how they can actually be quite painful for cyborgs. And so she just doesn't want that to get overlooked when people talk about cyborgs because like that meeting of like human and machine, can actually be very uncomfortable, very physically uncomfortable. So that's that's a little bit of what I'm thinking when you're talking about how this machine, you know, like clicks down and warns you when it's going to poke you and kind of hurt you. That's kind of interesting, which is also, it leads me to another question that I want to ask you about your relationship to this word cyborg.
Sarah:Yeah, happily. And also that's a great observation. And it definitely matches my experience. Like it's definitely hurts a bit, minor, but it's sometimes a bit messy and like gross, you know, like sometimes you pull it off and it's like stuck in your hair that adhesive or like actually I'm allergic to the adhesive on the sensor. So I have to like use something underneath it. All this stuff is kind of, you know, very bodily and perhaps abject sometimes, like in the way that like, you know, clipping your fingernails, it personal and it's really intimate. So that that comment about it being a site where there is pain is true in my experience. And you know, on the subject of the cyborg, I do think that by, you know, any definition of the term, I am a cyborg, which is like the coolest way to say that I'm diabetic, but of course the reality of being diabetic is like not very cool to be totally honest. I, you know, I wouldn't wish it on anyone. I would gladly not be diabetic personally. And, and I had like a bit of a process of thinking about this when I was first diagnosed because, you know, I'm a software developer. I've been one for a long time and I think that, you know, I know this is one of the broader themes of this podcast. There is this theme of the cyborg maybe as it's spoken about culturally, this location of desire, or the way that it's been used sometimes in theory as a maybe emancipatory figure. And I had absolutely been exposed to those narratives before. And especially as a software developer, I think I was like, oh, I'm a cyborg and that's cool. But, you know, after my diagnosis, I was wearing the device all the time and interacting with technology that I absolutely needed daily to stay alive. Like fun, diabetic fact, it's, you know, without insulin, you know, if you have type 1 and you've had it for a while, you will become very, very sick, very, very quickly. Like days to a week before you are hospitalized if not dead. And so, you know, you're very, very dependent on all this technological apparatus every day. But I had this experience shortly after I was diagnosed where I went to see the Venice Biennale. And it was the year that they did the Milk of Dreams exhibition. And there was this room in the exhibition called Seductions of the Cyborg. And it was all these, or a lot of the work was sexy women who were part robot. And I remember leaving that room and just being enraged. And I think it was just a very extreme, and quite recent after my diagnosis example of this sort of fantasy of the cyborg. And that contrasting my own experiences of, you know, being part machine in a new way. And having that be easily among the worst things that had ever happened to me. And, you know, I can take a photo of myself wearing an insulin pump looking cute. But there's a substantial part of my experience that is like filling out paperwork or being angry because I don't have access to the technology that I would like to be using. You know, and those all feel like very important parts of the conversation about my cyborg life, you know. So it's been, I have definitely seen a lot of these narratives differently since my own relationship to my health changed so significantly. And I think that, yeah, talking through these experiences as they relate to other cyborg myths that get used in culture is a really useful thing to do more of.
Tiff:Yeah, it's sort of interesting. Like when I hear you talk about this art show, there's a combination of the romanticization of the cyborg, a sexualization, but then there's also like the financial, like it's almost like the realities of who gets to be a cyborg. That narrative is like completely erased when you turn the cyborg into like this, this sexual being. And I'm not saying that cyborgism can't be sexy. That's not really what I'm talking about. It's almost like there is more of an erasure of what you're talking about, which is the almost monotonous like Kafkaesque, like admin trauma that you had to go through to even be a cyborg in the first place. So like, yeah, I could see why that erasure would be infuriating.
Sarah:I mean, I'm not hostile to the idea that being a cyborg could be sexy. And I'm not hostile to the self-nominated position of the cyborg coming from these artists. I think that the question of who gets to be a cyborg, what actually I kind of want to echo with is who has to be a cyborg, you know? And I think that it's worth thinking through alongside, you know, the desire to engage with technology because we want to, because we, you know, see, you know, in a Donna Haraway sense, like that the partially technological cyborg body as sort of an alternative to some kind of pre-existing binary thinking. But it's useful also to be like, who in the world already is a cyborg or how is technology interacting with people's bodies today right now? And, you know, like, I think most people actually perhaps in the majority of people who have technology interacting with their body in some sense, you know, in a very intimate, integrated sense didn't necessarily have a choice in the condition that got them there. We could have these conversations together in my opinion, or, or I guess just the, the omission of, you know, the experiences of chronic illness and disability feels very large in some of these contexts.
Tiff:When you were talking about it's not necessarily who gets to be a cyborg, it's who has to be like having, because yeah, like, I mean, I imagine that being diagnosed with an illness where you could literally die within a week if you don't get insulin, that I imagine that felt like a stripping away of choice, like you are now reliant upon this technology. And this is just kind of, this is a way more benign example, but I remember when I was diagnosed with asthma, I remember crying in my doctor's office, she, and she was like, oh, like, why are you, why are you so devastated? And I was like, well, I have to use an inhaler now. And what I didn't say to her is that let's say the apocalypse happened like tomorrow, and it stripped away access to an inhaler, like that would be devastating. Like I, I am now dependent on a medical device, like, I'm dependent on those medical devices, be like continuing to be developed and continuing to be accessible to me, to be able to live a life in comfort and without struggling for breath.
Sarah:It's definitely a readjustment of your relationship to certain ideas, which are a little bit bigger than maybe the, the small material thing of the inhaler or the medication or whatever the thing is. It's also a bit existential.
Tiff:There is just on a personal level, like a feeling of a loss of your autonomy and independence when you have to be interdependent on a, on a piece of technology.
Sarah:Well, one thing I haven't brought up yet that I think is core to what we want to talk about is that I actually use a bunch of open source apps to manage my diabetes. So every time I, I talked about, you know, one of these devices communicating with my phone, it might be communicating with my phone if I didn't use the open source apps, but there are sort of official ones made by the manufacturers of the hardware, but then there are also in the world of diabetes ones made by the community. So for quite some time, I think since the early 2010s, people with type 1 have been developing their own apps to manage diabetes. And, you know, that was born out of frustration. The world of official medical technology is slow moving in a large part because of regulation and, you know, medical regulation exists for very good reasons, but it is, you know, difficult to bring devices to the public that comply with all of these regulations. And, you know, people where it was called, we're not waiting, the sort of movement of people developing their own tech. And, they're pretty commonly used. There have been sort of a couple of different generations of open source diabetic management apps open source. It's called, one I use is called Android APS, Android automated pancreas system. And they think about 10,000 people worldwide use it. It's fairly common, but not, you know, that widespread. And for a variety of legal reasons, you have to build it yourself. So it's not officially distributed anywhere. You can't download it in the app store. You have to get the code yourself and, you know, actually compile it. I don't know. I guess I bring all this up to segue back to the original question of, you know, being interdependent with technology or not because I previously used non-open source apps to read my CGM. And my experience of them was that they were full of paternalistic choices that I was unable to override. That were actually kind of punitive to the user. So for example, the CGM that I use now is not the first one. I used the other kind previously, but the one I use now, when I switched to it, I just assumed that it would work with my phone because I have a fairly new and normal phone. However, you know, I, and I was so excited to try it because I've been meaning to use it for a long time. And then I got home and I found out that was not the manufacturer had not allowed people with my smartphone model to download that from the Play Store. And I found out that this is done because of medical regulation. They have to, they are required to actually have every single model of smartphone that they're going to allow people to run the app on and so actually test on each specific phone. But at the same time, as a user who does not want to buy a new smartphone and also happens to know that this is not really required. My phone has Bluetooth, you know, and the most recent version of Android. It felt, it feels very paternalistic to be locked out to have there be not even any way for me to check some button which says, oh, I'm doing this in my own way. Let me just try to see if it does work on my phone. Thanks. So actually, the reason I started using the first open source, diabetes management app is that I got home and I was like, oh, I guess I have no choice because of this choice made externally for me to supposedly protect me but from what. So the main thing that, or the, well, they read your blood sugar 24/7 and they stream it to your phone. But they also have a very important use which is they can send you alarms and you need the alarms either to find it when you have high blood sugar or low blood sugar. What do you think they sound like? Well, I will tell you, they sound like the most screeching, horrible noise. And you know, you can't turn them off, you can't, there you can change sometimes like the thresholds they go off at but not that much. And you can't, on some of these apps, you can't change the sound that they make at all. And this is all, I feel both paternalistic and punitive. And anyway, in the open source app that I ended up using, of course, all of this is totally customizable. It's so small. It's such a huge quality of life boost. And I guess it's like a step towards interdependence versus a system that yeah, I feel felt quite punitive to me.
Tiff:Can you talk a little bit about the data that is generated about your body through this open source app?
Sarah:Yeah. So this is actually one of the interesting things about the open source versions. I don't know where in the cloud the data from an official manufacturer app would be saved or who would have access to it. I do live in Germany and I know that Germany's data protection laws are very strong. And the health data is particularly protected. Actually, I think that it's so protected that there are some moves to make it that some doctors say it causes problems for them because they have trouble communicating or doing data sharing with other doctors who might have the same patient. But I'm not an expert in that by any means. However, in this world of the open source apps that I use, I am fairly sure that no one has that data, but me. I run the server for the streams too. I set it up myself and that was annoying. It is kind of interestingly a way to have a little bit more oversight into where it goes and to whom in the questions, preceding this episode, you sent me some thoughts about visibility and privacy. And it's certainly true that you, depending on what devices, conditions or technologies you may be using, there may be required ways that you have to give up privacy. I certainly felt uncomfortable about wearing something on my body all the time. It was tracking me at first. I would have not been a person who ever wanted to have a step tracker or whoever wanted to be monitoring my, any biometric 24/7. And then I very quickly was like, I guess I just had to get over that. And then did. But now that I have moved back from using any of the sort of official ones, I'm in a world where I do have more privacy again. But I think also, you know, there's some stuff to say about privacy and community and how the power lines are all drawn in this relationship that are very interesting. I think that the opposite of privacy is not community.
Tiff:That makes sense.
Sarah:So like the opposite of privacy is in my way of thinking about it like surveillance. And it's not that I, you know, I tend to be a person who thinks privacy is very important. I tend to be a person who thinks that we should have pretty wide ability to consent to what data we might make or produce could be or should be shared where. But kind of interestingly, you know, in the world of these open source tech that I'm using, I am like embedded. I have more privacy, but I am more embedded in community because all of these apps are made by individuals, mostly I think in their spare time. And all of the communication about them is in group chats and on message boards. You know, I feel both such psychological relief. I can't even like very profound when I, as a software developer already, which I was. If I have a question about how this works, I can just go into it. If I am really annoyed by how it works, I can fix it or change it or experiment with it. But also, I can ask that people who made it directly in a message. I mean, I don't want to say that it's all, you know, sunshine and roses in this world. It's definitely harder. Many things about the apps, you know, are not very polished. They're definitely not actually, they're not that accessible to everyone because they do require a bit of technical work to get running them. So either you or realistically someone in your personal life needs to be willing to help you with that, to use them because, you know, your doctor actually isn't legally allowed to. And if you're confused about something, there's no customer support hotline you can call. There's also risk involved, you know, if I had set it up in correctly, I could be receiving, you know, incorrect or at least not optimal insulin doses. So, you know, the user has to put in more legwork to get them working. So, in some sense, they're actually not very accessible. Though actually, they're really accessible in other senses. For example, like the CGM app has a completely audio only interface. So you can, it will read out everything to you in audio and you can also interact with it all this way. So, you know, I guess it's, it's very different than using official professional software. But you do have a feeling of agency and you do have a feeling of being supported by a community of other people who have similar experiences to you.
Tiff:Thank you so much. I really appreciate your time and your generosity with your thoughts. So before I close out the episode, I want to stress that there are no clean lines in disability studies or in disability justice. In fact, one of the great injustices that has been done to the disability justice movement is the illusion perpetuated by the commodification of social media content and the so-called wellness industry. It's the illusion that the irreconcilable must be reconciled if we are to have disability justice. But the whole point of the political relational model of disability or even the social model of disability is that there are a million and one ways to be disabled because there are a million and one points of political and social relationality. And if this relationality is never static because of shifting politics, class relations, technological development, access to health care, whatever else, that means disability is never static either. It's our job as scholars not to reconcile this relationality with an easily commodified viral hot take. But to continuously with infinite reserves of curiosity, analyze always-already shifting modes of disability. Paradoxically, I think this is how we realize disability justice that meets more people's needs, includes the full participation of people with disabilities and avoids the pitfalls of neoliberal commodification, masquerading as disability justice. So with this in mind, I want to bring up two persistent irreconcilable differences that kept coming up during my course discussions. The first is a theoretical or philosophical one between post-humanist and humanist thought. Post-humanism is the de-centering of the supposedly autonomous, independent experience of being human, in favor of an interconnected and interdependent view of the relationships between humans, the natural world, and technology. And while it's fairly clear to me how important it is to give up our dominance over our natural ecosystems in favor of a more reciprocal relationship, it feels less safe for people with disabilities to commit to an interdependent post-human relationship with technology, given its current orientation to capitalism. I don't agree with a theoretical retreat from post-humanism, but I can see why a humanist resurgence is happening as a reaction to the way technology is currently being developed. It also wouldn't be true to the history of the disability rights movement to say that a human-centered campaign focused on agency and independence didn't lead to some important gains for people with disabilities. Before the 1970s, the medical model of disability, which fostered institutionalized and structural dependency, powerlessness, and poverty, was the prevalent model through which governments dealt with the issue of a non-working population. So you can understand why disability rights activists at that time were primarily concerned with asserting their human independence and autonomy through a social model of disability. And at that time, and quite frankly still, many activists viewed social participation as synonymous with upward class mobility or the ability to participate fully in the labour economy, which brings me to my next point of tension, assimilationist versus radical approaches to disability rights. There can be a lot of overlap between the two, but basically, assimilationist disability justice seeks to make sure people with disabilities can participate fully in the economy as workers. White-collar work that can be done remotely would, for example, be considered a win for some people with disabilities, whose physical impairments make a home office and ideal workspace for them. Radical disability justice, on the other hand, argues that ableism is actually inseparable from capitalism, colonialism, and white supremacy. A radical disability justice framework is necessary for recognizing, for example, that neoliberal austerity measures disproportionately and by design force people with disabilities into poverty. A win for radical disability justice would be that disabled people are completely free from the financial burden of disability, regardless of their employment status. Depending on your political orientation, you may think one approach is more important than the other, or if you're pragmatic and still genuinely concerned for the well-being of people with disabilities, you may just think assimilationist approaches are easier to implement and when it comes down to what we should prioritize with the seemingly limited resources we have, they're just more realistic. But if you're someone who likes to dream of alternative futures and try to make them a reality, you may not be motivated by solutions that bend to fit a capitalist framework. The radical framework may be the only kind of disability justice you're interested in. But of course, just as we can't so cleanly draw line between who is disabled and who is not, we also can't so cleanly delineate between an assimilationist and radical disability justice approach. As long as capitalist labor relations exist, as opposed to socialist ones, we will always need movements that soften the cruel sharp edges of capitalism so people with disabilities and all their intersectional identities can participate in society the way that able-bodied people can. But without radical approaches that seek to dismantle the root cause of so many political relational barriers, assimilationist movements may be a bit like playing whack-a-mole and with gains seen only for more privileged tiers of disabled people who have earned the right to be part of the exploiter class. So for now, we engage with both approaches and build coalitions between groups that are focused on achieving outcomes across the entirety of the radical assimilationist perspective. And that's the episode. Thanks for listening. I hope you learned something this week or you're at least better able to sit within the irreconcilabilities of disability. I seem to be on a yearly cadence with this podcast, so maybe I'll see you in 2026. Until then, take care of yourself and your community. [MUSIC] [MUSIC] [MUSIC]