Medical technology and bodily authority
And in fact, you know, the DIY APS community, the artificial pancreas system community, has a hashtag WeAreNotWaiting.
Ashley Shew:Definitely, there's this idea that the cure is always coming is really not helpful to disabled people who currently exist.
Becca Monteleone:There is this joke in the diabetes community of everybody's always telling me that it's two years away. One of my informants was told that fifty years ago when she was diagnosed. Hello, my name is Becca Monteleone and I am an Associate professor of disability studies at the University of Toledo and the author of the book The Double Bind of How Medical Technology Shapes Bodily Authority. And I am so excited today to be in conversation with Doctor. Ashley Hsu.
Becca Monteleone:We're going to chat all things disability, med tech, authority, ableism, and so on. And so just as a kind of brief overview of what the book is about, it really is looking at this relationship between people and medical technologies that are made to detect, mitigate, prevent, or cure disability. And I'm really, really interested in these questions about how these technologies change how we frame disability and the kinds of ways that they articulate disability as a problem. And then, consequently, kind of who gets to decide what we do about that problem, and then who is responsible for enacting those interventions. And what I find, I look at three different medical technologies, specifically prenatal genetic testing, deep brain stimulation for motor conditions like Parkinson's disease, and then do it yourself artificial pancreas systems created by people with type one diabetes.
Becca Monteleone:And while those feel like they don't have anything in common at all, what I find is that across these technologies, these users get stuck in this double bind where they are both expected to be responsible for taking care of the quote unquote problem of disability. And at the same time, their lived experience, their embodied expertise is not taken seriously at all. And so they're both expected to be responsible, but not able to be authoritative and instead are expected to always defer to what a clinician or what laboratory medicine says is the way that we manage disability. That sounds bleak, right? But talking to people, you find all of these ways in which kind of within this really restrictive sociotechnical system, these users are finding new kinds of social, political and material arrangements that can resist some of that kind of individualization and control and move toward a sort of a politic that embraces that embodied knowledge.
Becca Monteleone:So that's a big picture of what we're talking about today. But I want to give a chance for Doctor. Shu to introduce herself and kick us off.
Ashley Shew:Hi, I'm Ashley Shew. I'm super excited to be in this conversation. I'm a professor of science, technology, and society at Virginia Tech, and I'm also really interested in pretty much everything in this book. The experiences of disabled tech users and their thoughts about technology are central in my own work. And it's an honor to read this book early, the best part of scholarly life, and to be in this conversation with Doctor.
Ashley Shew:Monteleone. Is it okay if I start in on questions?
Becca Monteleone:Yeah, let's get to it.
Ashley Shew:So first of all, I am a fan of this work and I've read some of your other work prior to this point. And you even talk about in this book, your earlier work with Ali Day on quantified healthism. I'm wondering about the origin stories of this book with relationship to all of the other things that you've worked on and how this book came to be in the context of your other work.
Becca Monteleone:Yeah, thank you for that. I think I have been interested mostly in questions about knowledge, right? How do we make knowledge about disability? And why is it so often that that knowledge doesn't include disabled people? Right?
Becca Monteleone:And you find yourself, I think, in the spaces that we run-in in disability studies and STS coming back to technology over and over and over again. And I think often when we think about technology or we critique technology in disability studies or in STS, we can often treat the technology itself like that's the most important thing, this very kind of socially deterministic approach, and be like, all of this, you know, this new technology is exceptional because it's suing X or Y. And that's where a lot of my work started is critiquing these technologies. And thinking through, you know, like the work I do with Ali Day on quantified healthism, the way that we kind of measure and visualize body minds through these technologies and the consequences of that. But then when I kind of came into this work, I wanted to explore more nuance, right?
Becca Monteleone:I wanted to get back to kind of the human, the mundane. And in fact, actually a piece that you co wrote was part of that inspiration that you wrote with Mallory K. Nelson and Bethany Stevens, where you talk about experiences of technology as disabled women. And there's a line in there where you say, none of this is super, all of this is every day. And it made me think about kind of the mundanity of technology instead of refocusing on the human experience.
Becca Monteleone:And so in this book, I really wanted to focus on that kind of qualitative human experience of technology and learn what we could from that. And so that's kind of how those pieces came together.
Ashley Shew:Yeah. And so what you're doing in this book is methodologically really interesting. So we have very different methods, even though I think we agree on a lot of the fundamental problems and issues and questions of knowledge and expertise being really, really interesting. So I feel like I learned a lot from your book. You were very good at referencing what your informants were saying about technology in a way that flowed really well with your case studies.
Ashley Shew:I'm wondering about sort of how you thought about methods and how you thought about doing these, like, three very different sorts of technology case studies. Well, I wanna ask you about the choice of those in a second, but but first I'd like to ask you about the methods that you're using in this book.
Becca Monteleone:Sure. Yeah. I mean, I'd love to talk about methodology. I describe myself as a bit of a scavenger in that I'm taking a lot of things from a lot of different disciplines and practices, in part because I come from kind of just an anti disciplinary mess of a background. But I really drawing kind of methodologically from qualitative sociology more anywhere else.
Becca Monteleone:And so the cases are built around a series of semi structured and unstructured interviews with users of these technologies. And then each of the cases has some additional input from an additional kind of secondary source that changes depending on what the case is. And then also doing qualitative analysis of different kind of material things that exist around these technologies, whether that's what a hospital system presents to patients about deep brain stimulation or a commercial website for a prenatal genetic screening technology, right? And so using that as a piece of evidence rather than as presenting kind of factual information, but also being like an interview, a kind of value laden, positioned piece of evidence that I can then build into this argument. And so I use a lot of kind of inductive analysis.
Becca Monteleone:I'm laser focused on what it is that my informants are saying rather than trying to kind of impose a theoretical framework. So doing a lot of kind of ground up building in cases. And I take a lot of inspiration from methodologists who talk about approaching empirical work with humility. I recognize the power of the informants offering me their stories. I'm really careful to try not to overanalyze or over abstract or overdetermine what it is that they're sharing with me.
Becca Monteleone:And so there is a lot of theoretical stuff at the beginning and the end of the book, but the case studies themselves, I really try to kind of cue very closely to what it is that informants are presenting me with and trying to kind of honor that in the process.
Ashley Shew:No, I love that. And I feel like there's so much work in the area of disability that could use more humility as someone who studies some of these things as well. That's a lovely, observation. I'm wondering now, you have these three very diff very, very different case studies, prenatal genetic screening, deep brain stimulation, and DIY artificial pancreas systems. I imagine at some point you were writing an IRB for each one of these and mapping out the scope and a proposal for how to do Did you know when you started writing this book that it would be these three cases?
Ashley Shew:Or what was your choice in terms of thinking? Because I can imagine other types of systems and technologies thread through the same framework and with some similar methods to what you're doing. What made you choose these three? What was interesting about them to you?
Becca Monteleone:Yeah, thank you. Mean, write at the very beginning of the book, I think it's like the third paragraph, I'm like, these things seem like they don't have anything in common, so let's talk about what they have in common. But I mean, I came to the three cases separately, right? So I was kind of doing work in each of these spaces when I started to kind of draw them together. And in fact, with thinking about prenatal genetic testing before kind of moving into these other spaces.
Becca Monteleone:And you know, there are a couple of reasons why I think that they work together. But I think to your point, you know, one of the points that I am trying to make here is that these are not exceptional technologies. They're certainly indicative of what I'm seeing as this kind of strengthening moral and material regime around how we think about disability and technology. But this could be done with a case study on cochlear implants or neuroprosthetics or, you know, pacemakers, right? I believe that you would kind of yield similar results within this framework.
Becca Monteleone:But I do think there are some things that make these cases interesting to put into conversation, and I think it's because a lot of them deal with these issues around control, right? And control looks different in the different cases, but there are certainly kind of resonances around, what it is that we're supposed to control about how we present ourselves as good, responsible citizens in the world, right? So with prenatal genetic testing, prospective parents are expected to make the responsible choice not just for themselves, but for their societies. This comes up in the interviews around, you know, it is costly to raise a disabled child, and so therefore you have to think about that when you're making a choice. You know, in deep brain stimulation, many of my informants spoke about a desire to return to paid employment or a desire to alleviate some of the caregiving that those being done by, you know, a spouse or a familial caregiver, and the ways in which they felt they were responsible to do that.
Becca Monteleone:And so therefore, that's why they adopted deep brain stimulation. Or in the artificial pancreas system case, many people with type one diabetes talk about the blame they are assigned all the time because the kind of daily burden of management of chronic illness falls on to the user, right? And so they are kind of constantly confronted in the clinic by a non disabled clinician about why aren't you trying hard enough? Why aren't you doing enough? Why are you failing?
Becca Monteleone:And so this idea of kind of responsibility and control sort of bleeds through all of these, I think.
Ashley Shew:Yeah. And some of the language that you use around responsibility and control, some of which comes from your informants and some from your analysis. I was really struck by the term that you use, epistemic invalidation. Can you tell us a little bit more about epistemic invalidation as a concept?
Becca Monteleone:Sure. Yeah, absolutely. I mean, so this is what I'm seeing as the kind of rejection of that experiential and embodied knowledge that happens in the clinic. So this idea of an epistemic invalidation comes up, I think, most strongly in the chapter around deep brain stimulation, in which we have these users who've received this brain implant, which if you're not familiar with deep brain stimulation, you're receiving kind of a constant electrical charge that is in a targeted area of the brain that is meant to mitigate some of the symptoms of movement condition like Parkinson's. And so often there will be associated side effects with this, some of them are kind of well researched and some of them are less well researched, but there are other things that people experienced in that deep brain stimulation.
Becca Monteleone:So for example, I had an informant who talked about developing depression after they had had an adjustment made to their deep brain stimulator, and they brought that to their clinician and their clinician said, No, that isn't related, right? Because the psychiatric and the neurological are completely different and these are completely dissociated from each other. And so she went to another clinician. That clinician also said no. And then she turned to a community of other people who had received deep brain stimulation, and she was able to connect with someone who was across the country who was like, That exact same thing happened to me.
Becca Monteleone:I had a clinician who worked with me. Here's the evidence that they presented. Bring this to your clinician and move forward that way. And so this is, I think, just one example of kind of when your embodied experience comes into conflict with kind of what the clinician or the laboratory medicine, right? So sometimes it's about like, well, I looked at your brain and I didn't see anything, right?
Becca Monteleone:So the visualization piece of it. So when there's some kind of tension or conflict between that embodied experience and the tools that a clinician or a medical establishment has available to it, that embodied experience is going to get dismissed. Right? And this links to all sorts of ways in which we see this happening to disabled people everywhere. Right?
Becca Monteleone:I think it's Jackie Leach Scully who writes about how disabled people are often met with suspicion when they share things about their lives that go against kind of what the prevailing hegemonic discourse is, because there's an assumption that there is some kind of self interest there. And so I think that links to this epistemic invalidation in similar ways that we just don't believe disabled people when they say things.
Ashley Shew:No, I mean, this is so true. You know, experienced this my own life. I've witnessed it with other disabled friends. And it like this book gives me some language about it that's really, I think, really helpful. There will be a couple of times during the semester I teach on technology and disability where we read lots of disabled people stories and things.
Ashley Shew:And there'll be a couple of times in the semester where, like, the only conclusion is that there's no good way to be disabled. Right? Like, no matter what you do, like, it doesn't fit into the script and having, like, the language of the double bind, like that is the very, front piece with your title is actually really, really useful because explains why there's no good way to be disabled in in a shorter way than it is. Like, you know, just look, look at all of these like here, collect all of these stories. Like sometimes concepts help us replace the need to write a dissertation.
Ashley Shew:These sorts of things like can be shorthand conceptually. So I really, really appreciate that language of the double mind and what you do around like epistemic invalidation and the community part I wanna ask you about too. So with deep brain stimulation, this example that you're giving with someone experiencing depression who has gotten a modification on their deep brain stimulator, you know, they get validation within their community. And we hear about this with all sorts of technologies. I think about it sometimes in terms of this like DIY, like, what are we going to do if they don't believe us?
Ashley Shew:There are lots of ways that can go very wrong, right? Sometimes medical supervision is useful so that you don't like poison yourself, convenient things like that. But the sort of disbelief that's involved that, can you say a little bit about the importance of community from this research?
Becca Monteleone:Yeah, absolutely. Actually, to your first point, the ways in which it's like, there's no good way to be disabled in the world. I was just thinking, so in the conclusion of the book, before I kind of pitch this, like, new embodied knowledge politic, I say explicitly, like, it just seems like there's no good way to exist in a non normative body mind without being accused of transgressing some authoritative boundary or knowledge boundary or boundary around kind of what constitutes acceptable embodiment, right? Because something I write about in the book quite a lot is the different ways that disabled people understand risk versus how nondisabled people understand risk. And so that's often viewed as you're making a choice, you're transgressing a boundary around what's acceptable to do or not do to your body, which I think relates to these questions around community, right?
Becca Monteleone:Especially thinking about the do it yourself artificial pancreas system and that community, that movement that has sprung up around people with type one diabetes, which to just kind of give a brief overview of what that looks like, a do it yourself artificial pancreas system is essentially hacking some of these diabetes technologies that are preexisting, like insulin pumps and continuous glucose monitors, in order to create a system that relieves some of that kind of everyday management of blood sugar by shifting some of that over to an open source algorithm, as opposed to you having to make those kind of minute by minute decisions about whether you're going to dose additional insulin and how you're measuring what you're eating and those kinds of things. And that has been viewed very differently by different groups of people, right? The medical technology company Dexcom originally called these DIYers rogue cowboy hackers. Right? And so this this presumption that these are people who sort of wobbled out of this passive patient role and now into this kind of authoritative, agential role are doing so without anybody's authority, who are just kind of wilding out and going off.
Becca Monteleone:And kind of universally, what I found from people who are part of that movement is that they are getting benefits from being in the community that extend far beyond the benefits that they get from kind of using the technology itself. And so much of that has to do with these shared priorities, right? So there is both this kind of epistemic invalidation that you're experiencing this blame, this guilt in the clinic, but there's also people were talking about the kind of just apathy that they were feeling from the medical companies, for example. So Dana Lewis, who is one of the founders of the first of these artificial pancreas systems that was made available, she talks about her experience quite publicly. She originally started doing this because she needed the alarm on her CGM to be louder.
Becca Monteleone:She was sleeping and experiencing really bad blood sugar lows that can be dangerous. You can die from those. She wasn't able to hear the alarm and wake up in order to manage it. And so she had reached out to the company and she was like, Is there anything that I can do about this or that you can do about this rather? And they're like, We'll get around to it.
Becca Monteleone:And she's like, Well, I could die in the meantime. And so that kind of like apathy is what sort of stirred her to kind of see if there was some way that she could adjust this alarm, which then led to this kind of technology afterward. But this lived experience as being valuable is central to how these communities exist. And also, I think this movement away from a curative logic, which so much of the kind of medical establishment rhetoric around type one diabetes is like, we're going to cure it, right? Don't worry about it.
Becca Monteleone:Two years, five years, ten years, whatever. We're going cure it, so don't worry about it. That kind of logic isn't helpful in your day to day management. And so moving over into this DIY space, it's like, I need to get through tomorrow, right? I can't get through two years from now, five years from now.
Becca Monteleone:And then finding people who are like, Well, here's how I got through yesterday, is itself kind of very rewarding.
Ashley Shew:Definitely, there's this sense in which this idea that the cure is always coming is really not helpful to disabled people who currently exist. And it's so deeply entrenched in the way we talk about a lot of different types of disability, especially with this idea of techno optimism. All of your sort of disabled cases are read, Oh, in the future, everything will be fine. In the future, we'll figure out the genetic fix. In the future, We'll have the right technology that you won't even feel disabled or whatever that amounts to.
Ashley Shew:It's deeply unreassuring. We have lots of examples where they keep saying there will be a cure for something. And we're like twenty years into the cure is the cure is any time. And I don't think people outside of the world of disability have any appreciation of how obnoxious this is. You talk to a lot of different people on the way to this book and through this book.
Ashley Shew:And I'm wondering about some of the patient reactions to, I don't even like the word patient here because we're outside of the clinic usually when we're talking, like reactions to techno optimism as a theme that they encounter.
Becca Monteleone:Yeah, I think this idea of impatience, or if you just sit back and don't worry, clinicians are going to take care of it, right? I do think that that is threaded through an awful lot of this as a way to keep people in that compliant patient role. Just sit back, just follow the directions, and eventually we'll cure this. And in fact, the DIY APS community, the artificial pancreas system community, has a hashtag WeAreNotWaiting, essentially getting at that point because there is this joke in the diabetes community of, Everybody's always telling me that it's two years away. It's two years away.
Becca Monteleone:It's two years away. In fact, one of my informants said that she was told that fifty years ago when she was diagnosed. And she says the thing that has drawn her into this DIY community here, I've actually got a direct quote from her she says, I'm hooked to this community, and I'm so beyond grateful for what people do in it. I don't even know how to describe how amazing it is. The blessing of the do it yourself community is it's impatient.
Becca Monteleone:It's like, okay, don't tell us to wait. And so I think it's kind of the both end of recognizing and valuing and uplifting lived experience and recognizing that what we've got right now in the medical establishment is not sufficient. And so, the kind of blame that comes in the clinic is in part because what we've got available to people through these sanctioned channels isn't sufficient.
Ashley Shew:No, no, I really appreciate that. And then the idea that this sort of rhetoric is supposed to put people in this passive space where they listen to clinicians. It serves to actually exert medical authority or to discount patient, like, immediate worries if the cure is supposed to be out there in two years, which is such a fine amount of time.
Becca Monteleone:It's just far enough away, right? I remember at Coramette who talked about cure as being inaccessible, so it creates this, I believe the term he used was like a gilded priesthood, right? And so it's like the cure is for the experts to worry about. You don't need to worry about it. It's essentially kind of an additional way of gatekeeping that authority.
Becca Monteleone:These questions around authority are so interesting and around what it is that we're supposed to be intervening on. This comes up a lot in the deep brain stimulation case as well, because deep brain stimulation doesn't cure anything. It's a mitigation of symptoms, and those symptoms are often for the kinds of conditions that my informants had are things like tremor, things that are very visible. And so there's often this relationship between like, Well, you don't want to stand out as having this kind of visible difference, and so you want to use this intervention so that you're not making a spectacle of yourself. And in fact, one of my informants in that case didn't care about her tremor at all.
Becca Monteleone:She was one of the few informants that I talked to in that case who had been born with her disability as opposed to acquiring it. There were other things that interested I in addressing, like she was having kind of increasing difficulty breathing. So these conversations around getting this intervention were initially around like, these are the things that I care about. Is this going to address this? And she was under the impression that it was, and then it didn't.
Becca Monteleone:And her clinician was very focused on kind of limiting her tremor. And she says, it was like he was somehow trying to conquer my brain. He was so focused on the mitigation of this visible symptom that he wasn't listening to the things that I was actually interested in addressing, and it eventually led to she had the implant removed.
Ashley Shew:I love the way in which you use informant, like, testimony as part of this in all of these different cases. As you were trying to find folks to interview as your informants in this, were there any strategies that you used? Because you have, like, a diverse representation of feelings about the technology and experiences with the technology. And I feel like that would be really hard to like recruit for in terms of a study like this. I'm wondering about some of the like behind the scenes logistics of how did you get such good information from the people that you talk to?
Becca Monteleone:Well, thank you very much for saying that. And I think a lot of it is luck, right? And a lot of it is casting a very, very wide net in a lot of different places. And so I recruited through a whole range of different methods, and a lot of it started with these communities that exist outside of the clinic, right? So whether that's a Facebook group for folks who've gotten DBS or there are quite a lot of kind of online spaces for this artificial pancreas system.
Becca Monteleone:And some of it happened through snowball recruitment because these are communities, right? And so I would interview somebody and they'd go, Actually, I know somebody else who had this experience and you should talk to them, and that kind of network. I was just lucky that those things existed because going into this, it's not always easy to see that those things exist. I was very fortunate to have informants who were both kind of very open about their own experiences and very willing to share where they have found resources that then became a kind of place where I was able to do some additional recruitment.
Ashley Shew:I really appreciate the sort of brilliance of how you did this book. I think a lot of people who would initially go to study any one of these things would start in the clinic and then talk to clinicians and who they would recommend talking to. And I think about how sort of recruiting for studies around disability, especially by people not in disability studies, often doesn't capture the sorts of things that you've captured here that I think are way more important. You know, people always wanna send you to their like best patients and best patients, people who are You know, people who are compliant and people who are doing the things that the clinicians like are what you end up getting through those recruiting methods. And that's reflected in ways that I think end up invalidating actual wider and community based experiences in ways that are really, really tricky.
Becca Monteleone:Yeah, I will say I think that is a lesson I am grateful to have learned from disability studies. That is coming directly out of having a background in disability studies, because I think those of us who have done kind of empirical work in this space have all been subject to that cherry picking. In other studies I've done, not in clinical settings, but in social service settings, for example, where you have to go through the gatekeeper to get access, and the gatekeeper's like, Let me present the person who's going to give you the brand pitch for my social service organization. And so because I was already aware of some of those dynamics, there was kind of an intentional choice to kind of skirt that sort of recruitment.
Ashley Shew:-No, and especially in the world of technology, people, Oh, we talk to these people who use it the best, use it in the ways we expect. People have, like, the brand ambassadors coming out to tell you about this technology. Not that I think those experiences are bad or wrong, but they're just so shiny and corporatized. I feel like this book should be read by everyone who does sociological research. Like, about how you're going to, like, even talk about, like, who are the people you're going to talk to just because, methodologically, you're doing something that is such a better representation.
Ashley Shew:I see so many calls for participants where, as someone from disability studies, I look at this and I go, oh, oh, you know, what's gonna like, yeah, you'll get some interesting information, but it's not gonna be what you think because you don't see the people quite as well. So I really, really appreciate the way in which you've approached this topic. It's so refreshing. I'm sorry. I'm just fan girling.
Ashley Shew:I really wanted actually ask you about some of your favorite pieces in this book where you might wanna give us a little reading, a little flavor.
Becca Monteleone:I would love to I mean, so I am at heart like a fan of stories, and so my favorite parts of the book are the vignettes that I've been able to construct with some of the informants. In projects aside from this one, I spend a lot of time thinking about storytelling and how people express themselves that way and how that's a form of knowledge production. And that's something I try to kind of build into the book too, to show through the format of the book the argument that I'm making around kind of lived experience as a valid form of knowledge. I think there are a couple of vignettes that I really like, but maybe I'll start with this one from Mary, who was one of my informants in the deep brain stimulation case. Mary and I sit in a public library chatting about brain implants.
Becca Monteleone:She's an author living in the Southwest, writing about her experiences with early onset Parkinson's disease. In 2012, she underwent surgery for deep brain stimulation in which electrodes were implanted that now send electrical impulses to the areas of her brain that control gait, balance, and tremor. During our two and a half hours together, Mary shares both the joys and frustrations of her device. She's pleased with the implant overall, but she also expresses disbelief at how disconnected the designers of these devices and clinicians who oversee their use are from the disabled people who use them. For example, her implant is powered by a battery pack that rests just under her clavicle.
Becca Monteleone:Because the battery pack has a square edge, when she raises her arm, it juts out. Quote, They don't think about how you're going to shave your underarm. She laughs. She and her husband Barry, who joins us for the conversation, lament that there are so few opportunities for people with Parkinson's to share their knowledge with clinicians and designers. Mary tells me, When you go to a conference, you've got 500 people with Parkinson's, and you've got two people, two experts up there on the stage with their PowerPoint going blah blah blah blah blah.
Becca Monteleone:I've often said if you could get 500 medical professionals and force them to sit and listen to 20 Parkinson's patients up there on the stage, the amount of info they would learn would be amazing. But Barry quickly follows up with, except none of them would come. Near the end of our conversation, Mary shares her thoughts on a new device in development. It's an updated version of a patient remote, a controller that allows the user to adjust the level of stimulation from an implant within certain parameters. Where previous models have used buttons, this design features a sleek touchscreen.
Becca Monteleone:Mary rolls her eyes. For many people with Parkinson's, tremors and fine motor dexterity mean that touchscreens are difficult, if not impossible, to use. The irony is palpable. The sole function of this piece of technology is to enable user control over a medical device, and it's unusable by its intended audience. Barry says, quote, If they had talked to the patient first, they would have pointed that out right away.
Becca Monteleone:You're going in the wrong direction here. People with Parkinson's should be the ones designing these things.
Ashley Shew:I mean, all the vignettes that you use are so good, but that one makes me scream a little bit because I, as someone who hates touch screens, they're bad for all sorts of populations. So this is, you know, Mary's experience is in the context of Parkinson's. But there are some really interesting studies about installations about touch screens in hospital context for checking in and how this actually discourages some people from getting medical care and the ways in which people end up needing more help to use the touch screens. You're actually causing them to lose independence.
Becca Monteleone:But touchscreens are sleek and modern and cool, right? And I think this is all kind of embroiled in this conversation around, if we just have cooler, better technology, then that means that things have improved in some way, right? And I think that's part of this kind of pressure that we're seeing applied to even the informants and the cases that I talk about. We just make this assumption that better technology equals better society. And that includes things like replacing buttons with a touchscreen.
Ashley Shew:I hate it so much I tried to buy a car without a touchscreen in it. I just want to go on a whole thing about touchscreen sucking right now, trying to put that beside so that we can move forward Conversations. On this But this idea of things being sleek and shiny, I think of the cyborg Jillian Weissach quote, They want a shiny and metallic and in their image. That this is the aesthetics of these things end up. And I think that's why some of the DIY stuff ends up.
Ashley Shew:DIY things are not always the most beautiful, right? Because they're not like And like the sort of revulsion that people end up feeling like is around this sort of techno optimism. Anyway, I want to ask you about You mentioned it in the context of talking about the artificial pancreas DIY systems, but I want to ask about it in the context of prenatal genetic screening, about the role of corporations producing these technologies and what corporate ownership means for disabled people.
Becca Monteleone:Yeah, I mean, that's a great question, and it's one that I don't know that we know the kind of full scope of the consequences of this yet. So in the context of prenatal genetic screening and testing, increasingly these tests are being distributed by private corporations into clinics. So then also your results are often coming through these private corporations as opposed there's this whole infrastructure that seemingly exists in the prenatal clinic where if you get a prenatal genetic screening or testing done, then if there is something to discuss, you will often be referred to a genetic counselor who is meant to provide you with your quote unquote non directive care as they kind of talk through what the results are. But at least what I found overwhelming with the folks I talked to, that that's not the pathway that they're moving on at all. One of my informants talked about, I just got a PDF from a random company that said, nothing found or whatever it was, right?
Becca Monteleone:It was like a big rubber stamp that was like, all good, which in itself is misleading, talking about what it is that prenatal screening measures or doesn't measure. But there's both the increased pressure to adopt prenatal genetic screening and testing because of the existence of these private corporations. And there is also this new rhetoric around it, right? That you must adopt this in order to be responsible because there is an invested interest in you adopting these tests, right? Because there is profit now associated with them in meaningful ways.
Becca Monteleone:And also then each of these corporations has their own narrative around kind of what these tests do and do not do. And so part of the evidence that I looked at in that case was what these privates were saying about what their tests and screens do and do not do. And that rhetoric changed depending on what the site was, depending on who they were trying to capture, right? Because they are also trying to publicly solicit the endorsement of clinicians to adopt their specific brand of screening and testing. I think it certainly kind of complicates things.
Becca Monteleone:I think Adele Clark and colleagues kind of model of biomedicalization talks about the sort of privatization of health care and some of the implications of that. But it certainly reinforces and strengthens these narratives that associate the adoption of these kinds of screens and tests as necessary for your responsible parenthood, which then extends to your responsible citizenship.
Ashley Shew:That's right. I'm wondering about this is a really good book that's really well researched. How much of your life have you spent on this? Did this snowball into a project? Were you going to write an article about one of these things?
Ashley Shew:I'm just wondering about the timeline.
Becca Monteleone:I think I did my first conference presentation about these issues and prenatal genetic testing specifically in 2017. I think that's when I put in that first IRB to start collecting some of this empirical data. And what's actually been really interesting, and I think you probably understand this as an STS scholar and really frustrating, is that when you work on a project for this long about technology, the technology has changed completely and the landscape has changed completely since then. So, for example, right, I started interviewing people about artificial pancreas systems in 2018. The first artificial pancreas system had only been made kind of publicly available in 2015.
Becca Monteleone:Right? And so that has changed enormously. That landscape has changed enormously. There has been a pretty concerted push to try to move some of these technologies that have been developed in these DIY spaces through FDA approvals. There has been a hybrid closed loop insulin pump that has become available commercially.
Becca Monteleone:And there have been lots of reactions to that, which I'm happy to talk about, but are kind of irrelevant here. The ways in which the technologies have absolutely transformed in that almost a decade has been interesting. It's been interesting to see that. And something like the prenatal genetic screening, particularly the noninvasive prenatal genetic screening, which are these kind of blood tests which change people's risk calculus, which means that they're kind of being introduced into the clinic on a more regular basis because there is, quote, no risk in getting these tests done. The proliferation of those in the clinic has been pretty universal in The United States, right?
Becca Monteleone:And so that has changed the landscape, that has changed attitudes. The overturning of Roe v. Wade in 2022 has also changed that landscape in some pretty significant ways. It's been a long time and things have changed quite a bit. And I wonder if I started this project now, how it might look different.
Becca Monteleone:But I do think kind of some of the root social narratives that emerged are absolutely still there, if not strengthened.
Ashley Shew:Well, no, and the concepts that you get to introduce through this work are long standing ones. I want to ask, what did you have to take out of this book that you would really like people to know? Or were there any things that didn't make it into this book, but that you've been thinking about, like, since the editing process, the bonus tracks?
Becca Monteleone:What a good question. I mean, I think there are so many kind of individual vignettes or beautiful quotes or things like that, but that just kind of sometimes fall out in the editing process. I try not to be, like, too precious with these kinds of things. My instinct as a qualitative researcher, particularly one who has really been committed to this kind of inductive approach, kind of ground up approach, is that everything is important. A person wouldn't say something to me if they didn't think it was important.
Becca Monteleone:And so sometimes it's just that process of being like, Yes, this is an important thing, but it's not important for this argument, or It's not part of this piece. In general, I really try to hold that value that people's personal narratives are important. Whatever it is that they're telling matters. So having to make some of those hard choices of, you know, this is what I can present in this chapter because this chapter needs to be not 200 pages long. It's an ongoing process, and this book went through quite a transformation.
Ashley Shew:I mean, you've done in this book is so monumental to make these chapters so readable, but also keep voices alongside the sort of theoretical and conceptual work that's happening. It's very exciting. Do you have projects that dovetail from this one?
Becca Monteleone:-Yes. Yeah. Thank you for asking that. Yes. My my next project is one that directly relates to kind of this issue of knowledge production and authority, particularly credibility.
Becca Monteleone:And so I am currently in the process of drafting a proposal for a book around the production of knowledge about intellectual disability in public discourse. And so that is being done in collaboration with a number of projects and partners I have working directly with people with intellectual disabilities. While it doesn't deal with the medical technology piece of this, it absolutely deals with the authority piece of this. And in this space, we can't think about authority over disability without also thinking about the medical establishment, right? And so it is a kind of series, a patchwork of different projects around how people with intellectual disabilities create kind of authority around knowledge production and what we need to do kind of to epistemically embrace different kinds of knowledge production.
Becca Monteleone:How do we move away from this expectation that knowledge must look like a certain kind of thing? We must use certain kinds of language. We must, appear certain kinds of ways and have certain kinds of credentials. So how do we challenge that and resist that? Which is very much in line with kind of what comes out of the conclusion of this book, That there are other ways that we can think and be.
Becca Monteleone:And so what do those look like?
Ashley Shew:Oh, I am so hyped about your next project. I cannot wait. On that note, do you have any other things that you want to tell us?
Becca Monteleone:No, I don't think this was an absolute pleasure. Thank you so much. I really want to reiterate that your own work has been really instrumental in the formation of this work. And so drawing a lot on your work on techno ableism particularly really informed so much of kind of how I structured this book and also just the humane way in which you write and think about technology and disabled people has been really, really influential in my own work. You know, it is all ambivalent, right?
Becca Monteleone:It is all gray area. And giving disabled people the grace to adopt medical technologies to alleviate the ableism that exists in the world while also recognizing that these systems are oppressive. That's not easy to do, and I've drawn a lot of inspiration from your own work.
Ashley Shew:Oh, thank you so much. I'm super hyped about your work and learning from it and can't wait to take it into my own next project. And I honestly am so excited about your next set of work on credibility and intellectual disability. It's so exciting to see where this is going, and thank you so much.
Narrator:This has been a University of Minnesota press production. The book, The Double Bind of How Medical Technology Shapes Bodily Authority by Rebecca Monteleone is available from University of Minnesota Press. Thank you for listening.